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"Fatigue is not a disease" - Unger Responds, Advocates Launch Petition

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On May 12th, 9 ME patient organizations (including Phoenix Rising) and 26 advocates sent a letter to Secretary Sibelius, Dr. Howard Koh, Dr. Thomas Frieden and Dr. Francis Collins at the Department of Health and Human Services (DHHS). In that letter, we expressed our strong concerns about the department's current definition activities related to "CFS" and called on them to start using the Canadian Consensus Criteria for ME, which requires the hallmark symptom of post-exertional malaise. A summary and FAQ about the letter is here, and the Phoenix Rising article about it is here.


Tell DHHS: Fatigue is not a disease

For those of you who wish to become part of this important initiative, a petition has now been created calling on the DHHS to stop using the term "chronic fatigue syndrome" and the vague "CFS" definitions and start using the Canadian Consensus Criteria. We urge all our members and readers to please sign the petition and spread the word to everyone you know.

If we get 25,000 signatures in 30 days, we will try to take the petition to the White House. It's a huge goal, but even if we don't reach it, we will use the response as further evidence of patient interest in addressing this critical issue. The more signatures we can get, the more pressure we can apply to the DHHS to stop perpetuating the "web of confusion" that has confounded ME research, made drug development all but impossible, and led to the inappropriate and sometimes harmful guidelines currently applied to "CFS" patients. To join that effort and sign the petition, please use the following link:

http://www.thepetitionsite.com/255/349/958/fatigue-is-not-a-disease/


Elizabeth Unger's Reply

Elizabeth Unger (Chief of the Chronic Viral Diseases Branch at the CDC) has now replied to the letter as follows:

Sent: Wednesday, June 5, 2013 5:58 PM
Subject: Response to signatories of May 12 letter c/o Marry Dimmock

Dear Patient Organizations and Independent Patient Advocates:

Thank you for your letter to Dr. Thomas Frieden, Director of the Centers for Disease Control and Prevention (CDC), stating your concerns about the Department of Health and Human Services (DHHS) activities related to the definition of Chronic Fatigue Syndrome (CFS), as well as your suggested steps to improve research and treatment. Your email was forwarded to me as Chief of the Chronic Viral Diseases Branch that studies CFS at CDC.

I can assure you that CDC is aware of the issues you have described and recognizes that patient advocates are essential partners in moving forward. CDC is fully committed to working with the CFS Advisory Committee (CFSAC) and DHHS to develop consensus about the case definition and name of this devastating illness. The need is not only for a case definition but also for reproducible standardized approaches to applying it, as well as for biomarkers to refine subgroups within the overall CFS patient population.

We are encouraged by the increasing engagement of NIH, FDA, HRSA, and AHRQ through the forum provided by CFSAC. The NIH’s State of the Knowledge Workshop on Myalgic Encephalomyelitis (ME)/CFS Research and AHRQ’s Systematic Review of the Current Literature Related to Disability and CFS are essential steps towards our shared goal of improving care for CFS patients. Likewise, the FDA’s Workshop on Drug Development for CFS and ME has provided new opportunities to capitalize on the energy and collaborative spirit of federal partners and stakeholders. CDC remains dedicated to conducting public health research, developing educational initiatives, and validating CFS phenotypes by utilizing the clinical expertise of physicians experienced in the care and treatment of CFS patients. CDC will continue to engage CFSAC, public health partners, and patient advocates in the development of control and prevention strategies to reduce the morbidity associated with CFS and to improve the quality of life of persons with CFS and other similar medically unexplained chronically fatiguing illnesses such as ME, fibromyalgia syndrome, neurasthenia, multiple chemical sensitivities, and chronic mononucleosis.

Sincerely,

Beth Unger


Satisfied?

At the recent Invest in ME conference, Dr. Andreas Kogelnik began his keynote address with a cartoon highlighting what we don't want: "We're ready to begin the next phase of keeping things exactly the way they are". Workshops and systematic reviews are all very well, and perhaps the department's belated efforts will bear fruit one day, but the patient community is demanding real change now.

In October 2012, CFSAC called for an urgent stakeholders' workshop on a case definition, using the Canadian Consensus definition as a starting point. On May 12, 2013, 9 patient organizations and 26 independent advocates called for DHHS to adopt the Canadian Consensus definition for ME and dismantle "CFS". In response, we have been told that preparations for a systematic review of the current literature are under way, the agencies are demonstrating 'increasing engagement' and as advocates we are 'essential partners in moving forward'.

That isn't an answer, it is not what we called for, and it simply isn't good enough. If CDC is "aware of the issues" we described in our letter, then it is aware that its continued failure to adopt a disease appropriate case definition is unproductive and harmful to patients. It should make the appropriate changes now to mitigate that continuing damage. We can't afford to wait for the various agencies to gather evidence in a process which by their own admission has - so far at least - excluded those patients who are bed-bound.

We do not claim that the CCC is a perfect case definition, and many of us would ideally wish for the DHHS to leap ahead to the ICC, but the adoption of the CCC would be a huge step forward. As we said in the rationale for our recommendations, we believe that "it provides the best option to establish a disease appropriate baseline definition in the short term that can readily be further evolved in partnership with ME experts as additional data, knowledge and experience is gained, and as the definition is further operationalized and biomarkers are validated."

So if you're not prepared to wait - until 2014...or 2015...or 2016 - for the DHHS to eventually come up with its own consensus case definition for ME, then we urge you to join us in calling on the DHHS to enter the 21st century and adopt the 2003 Canadian Consensus definition. Please sign the petition - and don't forget to ask your friends...

http://www.thepetitionsite.com/255/349/958/fatigue-is-not-a-disease/





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Comments

Why would the world health organization not apply in America ?

(i cant seem to find this answer )
If I understand correctly, USA uses the ICD codes for reasons in addition to the ones designed for the WHO ICD codes, so this is the reason for the clinical modifications. Because US is modifying the WHO codes, official permission is granted from WHO for this.

There are specific rules which are supposed to be followed, but USA is flagrantly ignoring them in the case of CFS NOS. UK has been flagrantly ignoring them for years in the case of conflating G93.3 ME with F48.0 Neurasthenia (which they conveniently gave an alternate name of 'fatigue syndrome') and telling doctors to code 'CFS/ME' at F48.0 (though these are mutually exclusive diagnoses), and occasionally advocates get WHO to send UK a hand-slapping letter about this.

For some reason USA thought it was too difficult and too expensive to get new software and train everyone in the ICD-10-based codes, so we are still using ICD-09-CM while the rest of the world is using ICD-10 versions.

Now they are writing ICD-11 and we have yet to switch to ICD-10-CM. :rolleyes:

In contrast, Australia wrote their ICD-10-AM in 1995, about 2 years prior to rollout of ICD-10 in most other locations, according to the following article.

http://library.ahima.org/xpedio/groups/public/documents/ahima/bok3_004847.hcsp?dDocName=bok3_004847

Canada has ICD-10-CA
Germany has ICD-10-GM
 
will have to research all this now too. A lot seems to be being made of the WHO classification code of M.E. as a Neurological disease .
this was based on scientific study done by doctors like A Melivin Ramsay and Donald Achelson (sp?). it was coded as myalgic encephalitis, a neurological disease, because the evidence was there for that.

However at that time there were some psychiatrists who asked to see records and got them. They never saw a single patient. They said it was hysteria even then, under the name of Myalgic Encephalomyelitis and with a correct neurological WHO code.

Lake Tahoe wouldn't happen yet for years.

There is a lot more to the political problems we have than the name and the CDC definition. It is a deeply-held prejudice in medicine (and psychiatry, but the rest of medicine happily goes along with it). We will have to fight this no matter what name we are using, although the name does make some difference.

Better definitions will help more because then the pathology will be more obvious. And funding will help a lot.
 
Hi Golden, RE

I would be happy to go into a new pile of patients, say called , The Unlabelled Providing It does not mean a psychiactric diagnoses by default.
This is by far the most intelligent option, people are constantly arguing about what name or what definition should be used, which I feel are pointless arguments, that lead nowhere and only play into the hands of those who do not have are best interests at heart.

The whole problem is not being caused by not using the right name or definition. The problem is caused by the fact that nobody is bothering to tests the patients correctly to rule out other known diseases, and are then researching mixed cohorts of patients with many known diseases, and claiming it is ME or CFS research and getting millions of dollars in government grants for doing it. In the recent multi blinded XMRV research they didn’t even test the patients for things like celiac, Vitamin D deficiency and iron deficiency etc, etc. And supposed CFS expert doctors were involved in this. See http://forums.phoenixrising.me/index.php?threads/a-multicenter-blinded-analysis-indicates-no-association-between-cfs-me-and-either-xmrv-or-pmlv.19420/

These kinds of common causes of CFS like symptoms are not even in the CDC CFS definitions.

What should be happening is that patients should be tested to rule out all other diseases that can cause their symptoms. If a cause isn’t found then they should be put into a new pile called unlabelled. They should then be properly researched until the cause or causes are found. That is all that needs to be done to solve this problem!! The fact that all these so called eminent CFS researchers will not do this, only makes me suspicious of their motives.

People are forgetting that CFS was invented by the CDC, it was not based on the serious well documented replicated research of sick patients. People also need to realize that ME is based on a number of epidemics that had similar, but not always the same symptoms. It is a hypothesis awaiting scientific proof that these epidemics were all caused by the same unknown illness. The science has never been done. It is possible that due to the limited technology at the time that some of these epidemics were caused by diseases that have since been found by science.

There is no scientific proof as yet that ME represents (one) single disease of unknown cause. So why are people arguing about names, why are people saying that such and such definition should be used, when there is no scientific proof that there is a single disease of unknown cause called ME. It could be caused by several unknown diseases, in which case there should be several different names and several different definitions. We won’t know until the science is done, and the science will never be done if they continue to study mixed cohorts of people with many different known diseases that are being misdiagnosed with ME or CFS.

I sure you will have come across people saying that CFS is nothing more than a garbage bag of lots of people with lots of different known undiagnosed medical conditions, and that ME patients are lost in this garbage bag. Because there is not an easy to use diagnostic test for ME, and never will be while mixed cohorts are being researched, it is largely impossible to pull the ME patients out of the garbage bag and then research them.

However it is very easy to take all the garbage out of the bag and the ME patients will be the ones left at the bottom, this can easily be achieved by for the first time ever by writing a complete differential diagnosis list with up to date reference ranges, and then testing all the patients and finding all the patients who have other known diseases that are misdiagnosed as CFS patients. Then the ME patients will be the only ones left and they can then be researched.

Until this is done advocating for definitions is pointless. The ICC and CCC are only the opinions of a few doctors they are not based on science, these definitions don’t even contain complete lists of all the disease that should be ruled out and what tests should be done. Therefore it is quite possible that the doctors behind these definitions are misdiagnosing people with ME or ME/CFS, in which case their opinions as to what symptoms a ME patient should have could be false. The symptoms in these definitions are after all very different to those found in the ME epidemics!! Which is where the name ME comes from.

Only by getting the garbage out of the bag and studying patients who don’t have a disease with a known cause will this problem be solved. Advocating for anything else other then this will achieve nothing

People should be basing all advocacy on the basis of compassion for their fellow human beings. What we have is a very large number of very sick people who are suffering terribly and are getting no help.

The aim of advocacy should be to help all these people. We should be demanding that all people are properly tested so that all those with known diseases can be found and treated. Everyone that after extensive testing to rule out other known diseases is found to not have a known disease, should be put in the Diagnosis unlabeled group. And of course they should not be labeled as psychiatric patients. They should be scientifically researched to find out what is the cause of their illness. Only then should names and definitions be created for these patients illness whether the cause is one disease or several.

Any attempt to advocate for names and the definitions at the moment doesn’t even make sense when the science hasn’t been done yet.

Personally I believe that the only reason why this approach has not been attempted since CFS was invented is Money! A very small group of people (who are closely connected) since CFS was invented have been receiving hundreds of millions of dollars to do CFS research, and none of it has ever come close to solving this problem. If a correct scientific approach to this problem was used, it would very quickly solve the problem, which would mean the money would stop being given to these people.

More information about who benefits from CFS, and ME and CFS being called the same disease can be found here http://www.hfme.org/whobenefitsfromcfs.htm

I personally strongly object to this recent letter to the DHHS and the petition on the grounds that it is factually incorrect the CCC is a definition that says that ME and CFS are the same disease.

The US CFS advocacy groups are saying

“The letter calls for the CCC case definition to be used and called "ME",

I find it totally unbelievable that these US CFS advocates feel that they can just say that the CCC is a definition for ME, when it isn’t.

By saying that the CCC, which says that CFS and ME are the same disease, should be used and should be called ME. They are only plays into the hands of the people making all the money. They will say to the US government look this disease is serious its listed as a neurological condition by the WHO, so give us even more money to research it, and they will spend it on studying mixed cohorts, which will achieve nothing.

You said

I have been let down by advocates before who are in bed with the agencies they are supposed to be protecting me from - due to their compromised funding situations etc. But I dont think this would be PR. I think Grace Charity for M.E. makes this point about M.E. charities.
I am not accusing anybody of anything, but you raise very valid concerns that I think everyone should be seriously considering!!! More information on problems with CFS advocacy groups can be found here http://www.hfme.org/topicactivismgroups.htm

I noticed you have found the hfme site it is a great resource, I highly recommend reading this publication by Dr Byron Hyde that explains what ME and CFS really are http://www.investinme.org/Documents/PDFdocuments/Byron%20Hyde%20Little%20Red%20Book%20for%20www.investinme.org.pdf

If you are interested in reading the real medical literature on ME before it was polluted with the CFS nonsense, much of it can be found here http://forums.phoenixrising.me/index.php?threads/historical-me-research-literature-and-related-information.10282/

All the best
 
Hi Mark, RE

I'm telling you that the reality is that many and perhaps most of us - certainly all of the leadership of PR - want to change the engagement model in exactly the ways you have described
A simple way to achieve a good engagement model, would be quite simply to tell people what you are doing beforehand, and let them have an input into decisions that may have a dramatic (potentially very negative) impact on their lives. Instead of presenting people with a fait accompli, and then implying that people who do not agree with the methods of the US CFS advocacy groups are trying to start a “civil war”. The patients are the majority! The US CFS advocacy groups do not have the right to make decisions for them! The patients must be consulted beforehand, otherwise the US CFS advocacy groups will lose the support of the patient community!

It is also very presumptuous of you to decide that I am not involved in advocacy, there are a lot of the things going on that you and the US CFS advocates are not aware of. Thank you for the offer, but I will not be joining in with the US CFS advocacy groups because they think it is acceptable to say that the CCC is an ME definition, when it is not, it says that ME and CFS are the same disease.

RE

what we need in order to do that is more people getting their hands dirty and sharing the workload.
If you, medfeb and usedtobeperkytina, representing the US CFS advocacy Groups who are involved in this letter to the DHHS would like to apply you memory to this subject, you will find that many people including myself have done an incredibly large amount of work in trying to come to an agreement as to what demands we the patients at PR think should be made to the US government. The problem is that every single one of these ideas has been ignored! And instead the US CFS orgs have decided that they know better.

Let me jog your memory you will find yourself, medfeb and usedtobeperkytina contributing to this tread http://forums.phoenixrising.me/index.php?threads/now-that-cfsacs-over-what-should-we-do.17972/page-23

In which many people spent a vast amount of time and effort trying to reach an agreement as to what we should be asking the US government for. Not one single proposal that we have come up with has been included in the US CFS advocacy groups letter to the DHHS.

This is the full list of proposals that the patient community at PR came up with, all of which have been ignored,

List of ideas for the US ME/CFS orgs.

1a. The CFSAC will be asked to recommend to the secretary of the HHS that the CDC CFS department is closed permanently, and its CFS website taken down, and all research that it is presently conducting to be stopped, and that the HHS will set up a new CFS department in another one of its agencies (such as the NIH) and that all government funding that the CDC has been receiving will be transferred to this new CFS department. If more funding is needed to achieve articles 2 and 3 of these recommendations the HHS will insure that they are provided. The HHS will supervise the creation of this new CFS department and insure that highly trained staff are selected for it and that it conducts itself in a highly scientific manner and is dedicated to finding the answers to the scientific nature of this condition and finding treatments to end the suffers pain

1b. This new CFS department will be instructed that as correct scientific procedure has never been followed in the history of this illness and replication studies have not been done to ascertain the true cause, CFS will be viewed until such time as the science has been done, as a disease of unknown cause, and it will be assumed that it is a physical illness until such time as this science has been done, (due to the detrimental effect on the patients of the previous assumed psychiatric nature of this illness) The new website created by the agency that has been assigned CFS will not contain any information that states or implies that CFS is a psychiatric illness, and will not recommend psychiatric treatments such as GET and CBT due to evidence that they may have a detrimental effect on some patients physical health.

(The new agency that sets up the new CFS department will be instructed that its number one priorities are to fix the massive problems of not having a complete differential and testing guide to rule out all other diseases that can cause the symptoms attributed to ME/CFS, and to immediately start fixing a almost complete lack of replicated science in this field. They will be instructed to do these things)

2a. An independent panel of Diagnostic experts will be created to write a complete differential diagnosis list and testing guide to rule out all other diseases that can cause the symptoms attributed to ME/CFS. They will write a step by step easy to follow guide on how to rule out all the other diseases and all the tests that are needed to do this. For difficult to diagnoses diseases, and where newer information for diagnosing certain diseases has been discovered that doctors may not be aware of. This guide will provide instructions on this and/or references to the relevant information Clinicians and researchers who have already created differential diagnoses lists that are more comprehensive then the CDCs list, or have a track record in finding the misdiagnosed patients in the CFS group, will be consulted or included in the panel. Such as Dr Byron Hyde, Dr Shirwan A Mirza, the writers of the CCC, and the writers of the IACFS/ME toolkit etc.

2b. When this new differential and testing guide is created it will be placed prominently on the new website created by the agency that has been entrusted with the new CFS department. Where it will be freely available to the medical community and patients.

2c.The HHS will inform the medical community and insurance companies of the existence of this new Differential and testing guide and recommend that it is used to rule out all other known disease that can cause the symptoms attributed to ME/CFS in all patients suspected of having ME/CFS. And all already diagnosed ME/CFS patients who have not had the testing recommended in the newly created guide.

3a. A new definition/definitions will be created, that will be based on independently replicated science. This replicated science will be based on the patients having had all the testing to rule out all other diseases that cause the symptoms attributed to ME/CFS, using the differential diagnosis and testing guide that will have been created when article 2a has been accomplished.

(This is to insure that people with other undiagnosed known illnesses are not included in the research, because it will have a detrimental effect on the results of the replication study)


A review of the medical literature will be done, to compile a list of the physical anomalies that have been found in CFS and ME patients, such as SPECT, PET, MRI scans, NK cells, RNase L, VO2 max, POTs, NMH etc, etc. Tests for the physical anomalies that are found in the review of the medical literature will be performed in a replicated manner on all the patients in all the groups selected for this replication study.

3b From this scientific information a new definition/definitions will be written. And new name/names for the illness/illnesses will then be created based on the scientific findings. CFS will not be used as the name for any of the illness/illnesses that have been defined.

(Due to the strong dislike amongst the patient community for this name, its failure to accurately define the symptoms the patient’s experience and its long history of being portrayed as a psychiatric illness)

3c. The Patient Community will be regularly updated on the progress of this project and the details of it, this information will be made available to the patient community via the new website that is created by the new CFS department

3d. Adequate Funding will then be provided to further research patients that fit the definition/definitions created by this process to find diagnostic tests, causes and treatments.

More information that explains the need for article 1, and supporting information and actions to achieve steps 1, 2, and 3 can be found in post. #454
http://forums.phoenixrising.me/index.php?threads/now-that-cfsacs-over-what-should-we-do.17972/page-23

More information that explains the details of and the need for article 2 can be found in post #421 here
http://forums.phoenixrising.me/index.php?threads/now-that-cfsacs-over-what-should-we-do.17972/page-22 And post #168 http://forums.phoenixrising.me/index.php?threads/now-that-cfsacs-over-what-should-we-do.17972/page-9

Detailed information on the need for replicated science can be found in Corts article here
http://forums.phoenixrising.me/index.php?threads/once-is-not-enough-by-simon-mcgrath.18191/

A more detailed explanation of the replication study proposed in 3 can be found in Post #331
http://forums.phoenixrising.me/index.php?threads/now-that-cfsacs-over-what-should-we-do.17972/page-17

I would also like to suggest that if the proposal to meet with the Secretary of the HHS Kathleen Sebelius is accepted that this plan is given directly to her as well as going through the CFSAC see
http://forums.phoenixrising.me/index.php?threads/me-cfs-orgs-push-secretary-of-health-sibelius-for-strategy-meeting.18237/

Other suggestions made are

Alternatives 4:

4i. That, consistent with its statement that “ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS,” the CDC will recognize the ME-ICC and its predecessor, the Canadian Consensus Criteria, as case definitions for ME, distinguishing ME (ICC, CCC) from CFS (Reeves, Fukuda).
Research on the ME/CFS population should not be carried out with the assumption that the cohort represents a homogeneous population.

4iii. That, consistent with its statement that “ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS,” the CDC should recognize the ME-ICC, as the case definition for ME, until such time as (articles 2a and 2b have been completed and) a new definition has been written based on replicated science. Until then ME-ICC will be used to distinguish ME from CFS (Reeves, Fukuda).
Research on the ME/CFS population should not be carried out with the assumption that the cohort represents a homogeneous population.


5. More research funding for the biomedical model of illness, using CCC and ICC alongside Fukuda for all research, until such time as the new definition based on replicated science is completed.
Research on the ME/CFS population should not be carried out with the assumption that the cohort represents a homogeneous population.


Alternatives 5:

5i. More research funding for the biomedical model of illness, using CCC and ICC for all research, until such time as a new definition based on replicated science is created.
Research on the ME/CFS population should not be carried out with the assumption that the cohort represents a homogeneous population.


6. Promotion of CBT and GET as therapies for CFS patients will be removed from CDC literature, toolkit and website.
(
can we be specific about what we want removed?)


Alternatives 6:


6ii. The CDC to remove all reference to CBT and GET from it's website, and clinicians warned that these therapies do not help the majority of CFS/ME patients, and a high proportion of patients anecdotally report being harmed.
The PACE Trial* demonstrated that CBT is ineffective at reducing phsycial disability in secondary care patients.
The PACE Trial demonstrated that only approximately 13% of secondary care patients respond to CBT or GET, but the trial excluded severely affected patients.
The FINE Trial* demonstrated that severely affected patients do not respond to therapies based on CBT that include components of GET.
In UK patient organisation surveys*, a high proportion of respondent reported being harmed by both CBT and GET,


7. The CDC will remove all information from their website based on CF/idiopathic fatigue (Oxford and 'Empirical' studies) or meta-analyses and review articles conflating CF/idiopathic fatigue with ME/CFS.
(
should we be more specific about this and provide specific information about what we want removing, or at least examples?)

Alternatives 7:

7i. "The CDC will remove all information from the CDC's CFS website, CDC's CFS literature, & CFS toolkit, that is based on CF/idiopathic fatigue (Oxford and 'Empirical' studies) or meta-analyses and review articles conflating CF/idiopathic fatigue with ME/CFS."


7ii. The CDC will conduct a systematic review of all its past research, and removed from the CDC's CFS website, CDC's CFS literature, & CFS toolkit, any information and research that is based on on CF/idiopathic fatigue (Oxford and 'Empirical' studies) or meta-analyses and review articles conflating CF/idiopathic fatigue with ME/CFS. Any unretracted or unremoved research, which is based on the previously described criteria, must be clearly marked as outdated.

7iii. The CDC will remove all information from the CDC's CFS website, CDC's CFS literature, & CFS toolkit, that is based on CF/idiopathic fatigue (Oxford and 'Empirical' studies) or meta-analyses and review articles conflating CF/idiopathic fatigue with ME/CFS.


8. The CFSAC should review all their previous recommendations for clarity, utility, redundancy, and applicability. Based on this review, and a review of responses received from the Assistant Secretary and Secretary (if any), and the requests we outline, the CFSAC should re-issue.


Alternatives 8:

8i. The CFSAC should review all their previous recommendations for clarity, utility, redundancy, and applicability. Based on this review, and a review of responses received from the Assistant Secretary and Secretary (if any), the CFSAC should re-issue recommendations that address current priorities in ME/CFS policy in a clear and concise manner.

8ii. The CFSAC should review all their previous recommendations for clarity, utility, redundancy, and applicability. Based on this review, and a review of responses received from the Assistant Secretary and Secretary (if any), and the requests we outline, the CFSAC should re-issue recommendations that address current priorities in ME/CFS policy in a clear and concise manner.



9. The CDC will produce a state-of-knowledge article, updated annually, in relation to ME/CFS, so that the older research and current views can be put in perspective. This will be an annual review article to be published.


10. The CFSAC should aim to educate physicians, schools, social services, and the public through any means possible to it, including making recommendations.(The reference to eduction has been placed back on the list, but with different wording - whoever first opposed the original item re eduction, please can you repost you objection if still appropriate.)

11. CDC should cease use of the surveys developed and presented in its "clinically empirical approach to the definition and study" of the disease, Reeves et al. 2005.(Again, this has been reposted but with different wording. If the original objections still apply, then please repost them.)


Alternative 11:
11i. CDC should cease diagnostic use of the surveys in its "clinically empirical approach to the definition and study" of the disease, Reeves et al. 2005,


 
hi rlc, getting people to try to diagnose those with ICF (who are being wrongly diagnosed with CFS) with some actual disease instead of sloppily using some vague criteria or other is definitely a prime goal. That is why I think the category of CFS needs to be ended as soon as can be.

the suggestion to use CCC (or ICC) is meant as an interim measure to at least step away from inclusions that are more broad (and include more misdaignosed people - the misdagnosed people is a concern of mine as well as the diluted sample preventing good science from being done in whatever ME is), as a definition using actual biomarkers is formed. We can always hope, right? :)
 
...

The letter and petition are about making a political statement, and creating awareness. I see no reason why we cannot put the CCC forward as moderately well established, while at the same time we make it clear that this is an interim measure and the science is evolving rapidly - so the real message to everyone is: watch the science. Things are changing. The ICC is the best definition we have currently. In five years it might be obsolete, in ten it almost certainly will be.
I do wonder if we fail to advance sufficient reasons for needing a change. You know? Like what difference it would make. Practical difference. To the existing population and to new diagnoses. I mean there is no treatment - no specific treatment - we are still dependent on symptom-based treatments: so what's the upside? Are we selling the benefits sufficiently? Are there significant benefits - practical benefits - in adopting the consensus - adding a couple of fixed symptoms to the diagnosis criteria - to warrant a change? Etc.
 
Hi Golden, RE

This is by far the most intelligent option, people are constantly arguing about what name or what definition should be used, which I feel are pointless arguments, that lead nowhere and only play into the hands of those who do not have are best interests at heart.

The whole problem is not being caused by not using the right name or definition. The problem is caused by the fact that nobody is bothering to tests the patients correctly to rule out other known diseases, and are then researching mixed cohorts of patients with many known diseases, and claiming it is ME or CFS research and getting millions of dollars in government grants for doing it. In the recent multi blinded XMRV research they didn’t even test the patients for things like celiac, Vitamin D deficiency and iron deficiency etc, etc. And supposed CFS expert doctors were involved in this. See http://forums.phoenixrising.me/index.php?threads/a-multicenter-blinded-analysis-indicates-no-association-between-cfs-me-and-either-xmrv-or-pmlv.19420/

These kinds of common causes of CFS like symptoms are not even in the CDC CFS definitions.

What should be happening is that patients should be tested to rule out all other diseases that can cause their symptoms. If a cause isn’t found then they should be put into a new pile called unlabelled. They should then be properly researched until the cause or causes are found. That is all that needs to be done to solve this problem!! The fact that all these so called eminent CFS researchers will not do this, only makes me suspicious of their motives.

People are forgetting that CFS was invented by the CDC, it was not based on the serious well documented replicated research of sick patients. People also need to realize that ME is based on a number of epidemics that had similar, but not always the same symptoms. It is a hypothesis awaiting scientific proof that these epidemics were all caused by the same unknown illness. The science has never been done. It is possible that due to the limited technology at the time that some of these epidemics were caused by diseases that have since been found by science.

There is no scientific proof as yet that ME represents (one) single disease of unknown cause. So why are people arguing about names, why are people saying that such and such definition should be used, when there is no scientific proof that there is a single disease of unknown cause called ME. It could be caused by several unknown diseases, in which case there should be several different names and several different definitions. We won’t know until the science is done, and the science will never be done if they continue to study mixed cohorts of people with many different known diseases that are being misdiagnosed with ME or CFS.

I sure you will have come across people saying that CFS is nothing more than a garbage bag of lots of people with lots of different known undiagnosed medical conditions, and that ME patients are lost in this garbage bag. Because there is not an easy to use diagnostic test for ME, and never will be while mixed cohorts are being researched, it is largely impossible to pull the ME patients out of the garbage bag and then research them.

However it is very easy to take all the garbage out of the bag and the ME patients will be the ones left at the bottom, this can easily be achieved by for the first time ever by writing a complete differential diagnosis list with up to date reference ranges, and then testing all the patients and finding all the patients who have other known diseases that are misdiagnosed as CFS patients. Then the ME patients will be the only ones left and they can then be researched.

Until this is done advocating for definitions is pointless. The ICC and CCC are only the opinions of a few doctors they are not based on science, these definitions don’t even contain complete lists of all the disease that should be ruled out and what tests should be done. Therefore it is quite possible that the doctors behind these definitions are misdiagnosing people with ME or ME/CFS, in which case their opinions as to what symptoms a ME patient should have could be false. The symptoms in these definitions are after all very different to those found in the ME epidemics!! Which is where the name ME comes from.

Only by getting the garbage out of the bag and studying patients who don’t have a disease with a known cause will this problem be solved. Advocating for anything else other then this will achieve nothing

People should be basing all advocacy on the basis of compassion for their fellow human beings. What we have is a very large number of very sick people who are suffering terribly and are getting no help.

The aim of advocacy should be to help all these people. We should be demanding that all people are properly tested so that all those with known diseases can be found and treated. Everyone that after extensive testing to rule out other known diseases is found to not have a known disease, should be put in the Diagnosis unlabeled group. And of course they should not be labeled as psychiatric patients. They should be scientifically researched to find out what is the cause of their illness. Only then should names and definitions be created for these patients illness whether the cause is one disease or several.

Any attempt to advocate for names and the definitions at the moment doesn’t even make sense when the science hasn’t been done yet.
Morning rlc :)

You know I kind of like the gist of your comment here. I do feel that one practical benefit we should push for is better initial testing to rule out the kind of alternate diagnoses that have been reported in various studies.

Although you can't possibly hope to test or examine and rule out everything - there will always therefore be a concern among patients with our diagnosis that they might have something else; we can certainly try and tighten up the 'entry criteria' by making sure that doctors are excluding more things.

I think doctors will only test for things that are suggested to them by observation. And not all doctors will consider testing for the same thing - fault perhaps of doctor and patient (depends on how and what the patient tells them and how they present). Also if you see one doctor/expert he/she will have a different 'take' on things than another - we all know this and so do they and it's bloody frustrating, but published studies on alternate diagnosis can make a difference if that knowledge influences entry criteria.

NICE state the following - by way of example:

1.2.1.4 Signs and symptoms that can be caused by other serious conditions ('red flags') should not be attributed to CFS/ME without consideration of alternative diagnoses or comorbidities. In particular, the following features should be investigated[5]:
  • localising/focal neurological signs
  • signs and symptoms of inflammatory arthritis or connective tissue disease
  • signs and symptoms of cardiorespiratory disease
  • significant weight loss
  • sleep apnoea
  • clinically significant lymphadenopathy.
1.2.2.1 A full history (including exacerbating and alleviating factors, sleep disturbance and intercurrent stressors) should be taken, and a physical examination and assessment of psychological wellbeing should be carried out.

1.2.2.3 The following tests should usually be done:
  • urinalysis for protein, blood and glucose
  • full blood count
  • urea and electrolytes
  • liver function
  • thyroid function
  • erythrocyte sedimentation rate or plasma viscosity
  • C-reactive protein
  • random blood glucose
  • serum creatinine
  • screening blood tests for gluten sensitivity
  • serum calcium
  • creatine kinase
  • assessment of serum ferritin levels (children and young people only).

    Clinical judgement should be used when deciding on additional investigations to exclude other diagnoses.
1.2.2.4 Tests for serum ferritin in adults should not be carried out unless a full blood count and other haematological indices suggest iron deficiency.

1.2.2.5 Tests for vitamin B12 deficiency and folate levels should not be carried out unless a full blood count and mean cell volume show a macrocytosis.

1.2.2.6 The following tests should not be done routinely to aid diagnosis:
  • the head-up tilt test
  • auditory brainstem responses
  • electrodermal conductivity.
1.2.2.7 Serological testing should not be carried out unless the history is indicative of an infection. Depending on the history, tests for the following infections may be appropriate:
  • chronic bacterial infections, such as borreliosis
  • chronic viral infections, such as HIV or hepatitis B or C
  • acute viral infections, such as infectious mononucleosis (use heterophile antibody tests)
  • latent infections, such as toxoplasmosis, Epstein–Barr virus or cytomegalovirus.
http://publications.nice.org.uk/chr...phalomyelitis-or-encephalopathy-cg53/guidance
Julia Newton et al. published a paper about alternate diagnoses based on the assessment of suspected or already diagnosed patients and detailed what those alternate diagnoses were. This is all based on the ability of the physician dealing with the patient.

Neil Abbot commented:

Continuing our guest series of articles by Dr Neil Abbot, from independent charity ME Research UK.

"At present, there are many ways of diagnosing M.E., CFS, CFIDS (chronic fatigue and immune dysfunction syndrome, as it’s known in the US), CFS/M.E. and M.E./CFS – just listing these acronyms illustrates the confusion that besets the field.

Yet each new definition delivers a diagnosis of exclusion (of other conditions), based on clusters of vaguely defined symptoms shared with other illnesses. The validity of a diagnosis of M.E./CFS really depends critically on the rigour of the initial clinical assessment and the efforts expended to exclude other treatable conditions that might be causing the collection of symptoms.
He went on to talk about this finding (sponsored by ME Research UK and the Irish ME Trust) from Newcastle and elsewhere all looking at the effectiveness (and arbitrary nature perhaps of clinical applications of exclusion criteria:

Looking at the results, Prof Newton found that 260 patients had been referred to the clinical service in 2008-9 (approximately 19 referrals per month). Interestingly, the proportion of patients found to be correctly diagnosed with M.E./CFS by the Newcastle service increased significantly compared with the results of a previous service audit in 2007 (60% versus 36%, respectively), a finding which might suggest that the introduction of the NICE clinical guideline in 2007 had somewhat improved the correct identification of these patients by GPs.

However, the most important finding was that 103 (40%) of patients seen by the Newcastle Service could, in fact, be diagnosed with other conditions.

The most common alternative diagnosis in these patients was fatigue associated with a chronic disease (47% of all alternative diagnoses). These included metabolic syndrome, neurological disorders, connective tissue disorder, autoimmune disease, fibromyalgia, coeliac disease, overtraining syndrome, cancer, low body mass index, haemochromatosis, microprolactinoma and Lyme disease.

The next common alternative diagnosis was primary sleep disorder (20%), including eight patients with obstructive sleep apnoea and 12 with another primary sleep disorder – an important finding since sleep disorders form a significant and potentially treatable diagnostic group.

A further 15% of all alternative diagnoses were psychological/ psychiatric illnesses (most commonly depression, anxiety and post-traumatic stress disorder); 13% were unexplained but not M.E./CFS (5.2% of total referrals); and 4% were cardiovascular disorders (vasovagal syncope in patients with fatigue symptoms who also had a history of episodes of loss of consciousness, with the diagnosis made after a reproduction of symptoms in head-up tilt testing). Just 1% were diagnosed with other illnesses.

Prof Newton’s results concur with those from two smaller, service audits (Dundee 1993; Newcastle 2007) and reiterate that a significant minority of UK patients referred from primary care with a diagnosis of M.E./CFS can receive alternative, exclusionary diagnoses if investigated at a specialist clinic.

They illustrate that in the absence of a full clinical assessment (which most patients in the community have either never undergone or last had many years ago), the diagnosis of M.E./CFS can easily become a stopping-off point for clinically complex patients with a variety of different illnesses.

This problem is not unique to the UK. A fascinating commentary in 2008 in Minnesota Medicine described the difficulties experienced at a clinic in the USA for patients with fatigue, exercise intolerance and weakness (ie. patients very like M.E./CFS patients in the UK).

After reporting on three paediatric cases (all of whom received serious, new diagnoses), the authors commented that “a thoughtful and thorough physical exam can sometimes reveal otherwise hidden diagnoses.” This certainly raises the question of which treatable diagnoses might be uncovered if all patients currently parked in the M.E./CFS diagnostic lay-by were examined intensively at a specialist centre of excellence by thoughtful and thorough physicians.

How marvellous it would be if M.E./CFS or the subtypes within it could be diagnosed objectively with criteria based on clinical or laboratory measurements. Illnesses are most easily accepted when they have a specific clinical or scientific signature, such as a biochemical test and/or a cluster of specific signs, which establishes diagnostic validity and confers legitimacy in the eyes of healthcare professionals.

The discovery of such a signature specific for M.E./CFS would transform the outlook for patients.

Autumn 2011.
So until such time as there are markers discovered that reveal what 'ME' is or isn't - I'd agree that what we should perhaps be trying to change is to ensure these criteria that are in existence seek to exclude common reasons for misdiagnosis. And that authorities seek to better educate their physicians to improve ability to diagnose. And increase the resources and training for specialist centre provision.

When Prof. Newton assesses patients for her studies - do you honestly think she sticks to the NICE guidelines or to Fukuda? Religiously? Does any researcher with clinical experience in the field? No. It will all depend on the level of expertise that the assessor/diagnosing physician/researcher actually has.

So in part - perhaps large part - it makes little difference which criteria is adopted at this point in time. It is all about spotting the signs and symptoms of something that might not be 'ME' and testing for it - if testing is possible - and excluding the patient.

The point is that if it isn't 'ME' then the chances are better that it can be more effectively treated.

Campaign for that we should :)
 
The Hummingbird Foundation is a resource of Excellence.

There is a Nightingale criteria which TESTS for M.E.

There will be permanent damage to the brain stem which shows on CT scan if one has M.E.

Plus bio markers and sudden onset, all make M.E. a SIMPLE disease to diagnose !!

So these tests are priority . That illness is called M.E. and it seems appropriately named .

It just seems straight forward?

If its not M.E., then start testing for what it is! Eg. pesticide poisoning, heavy metal poisoning , use the Melissa test and so on.


There seems to be a terrible lie that there is no test for M.E.
 
I do wonder if we fail to advance sufficient reasons for needing a change. You know? Like what difference it would make. Practical difference. To the existing population and to new diagnoses. I mean there is no treatment - no specific treatment - we are still dependent on symptom-based treatments: so what's the upside? Are we selling the benefits sufficiently? Are there significant benefits - practical benefits - in adopting the consensus - adding a couple of fixed symptoms to the diagnosis criteria - to warrant a change? Etc.

That's my problem with demands to change the name right now. "CFS" isn't the right name but neither is "ME." Yes, we know that an image change for the disease WOULD make a concrete difference in how it's funded, how scientists think about it, how the general public treats us, etc. But there isn't a good narrative for why the change should be made right now apart from "Patients are fed up!" When have we not been fed up? What causes a particular threshold of fed-upness to be reached?

Yes, I too want the name to be changed right now, yesterday, 20 years ago; but I don't think any name change will win scientific acceptance or stick in the public mind, or REALLY drive policy and funding change, unless and until it is accompanied by *some* level of consensus acceptance on new scientific understanding of the disease. What's the press release - "Disease name 'CFS' abolished because patients consider it prejudicial, although the change is CONTROVERSIAL," versus "Disease formerly known as CFS as been renamed XXX based on recent scientific discoveries A, B, and C."

Say for instance: if Rituximab pans out, while other investigations confirm that the B-cells are somehow crucial in the development of the disease, you could call it BMAD or BMID - B-cell Mediated Autoimmune (or just Immune) Disease. (I made those up, by the way. I expect royalties if they ever do get used.) You don't need to know exactly HOW the B-cells are operating in the disease mechanism is to have a more descriptive name, but to establish at a minimum that the B-cells are involved could be enough to go on.

And if it turns out that not all cases of ME/CFS/whatever ARE B-cell mediated, then other subtypes will have to get their own name(s). There may or may not be a rationale for some umbrella designation continuing to cover everyone currently in the wastebasket, or even all those currently meeting the strictest ICC definition for ME, if it turns out the subtypes are actually driven by different mechanisms. Hepatitis A, B and C are caused by different viruses - COMPLETELY unrelated to one another. "Hepatitis" just means an inflamed liver, for which there are literally dozens of different causes, but the end result "Hepatitis" is considered uniform enough to remain as the overall name.
 
The ICC and CCC , I have just been reading , are just a mish mash of M.E. and C.F.S. criteria.

There definately needs to be protectiion on the pure M.E. diagnostic criteria.

If say it had been called Rabies , and was well established for years , then someone invented CFS ,

now we have a situation where we have rabies /CFS , CFS /rabies , lets get rid off rabies and call it all CFS or vice versa ...

And Everyone is being let down.

Now , my personal diagnoses may be either because I have not had the proper tests I am reading about ...which would diagnose M.E.

But I am feeling I cant just snatch the rabies label thinking its interchangeable with CFS ...

The REAL issue is to find those with M.E. using appropriate tests and then properly test other patients .

Its a scandalous situation -
 
Morning Firestorm, RE

Although you can't possibly hope to test or examine and rule out everything
Actually we can!

The reality is that the number of diseases that cause CFS like symptoms is limited, yes it is a large number over a hundred. But all of these diseases could be diagnosed by around 40 blood tests and a few imaging tests such as MRI or ultra sound.

The majority of people that are misdiagnosed with CFS have very common illnesses that could be diagnosed by just adding ten blood tests to the NICE guidelines. So there would be no need to do extensive testing on the majority of patents as the true cause of their suffering would be picked up just by doing a few basic blood tests.

There are in fact only a very few diseases, that can be diagnosed with one test, the medical reality is that many people who are diagnosed with a serious disease will have often received 20-30 blood tests plus imaging scans etc before their correct diagnosis is found. The only reason why this doesn’t happen for people who get diagnosed with CFS, is that doctors are instructed by the likes of the NICE and CDC guidelines not to do sufficient testing on these patients and instead to hand out this idiotic CFS diagnosis which has no scientific evidence behind it, to anyone who has a set of symptoms that are found in over a hundred other diseases.

RE

I think doctors will only test for things that are suggested to them by observation. And not all doctors will consider testing for the same thing - fault perhaps of doctor and patient (depends on how and what the patient tells them and how they present). Also if you see one doctor/expert he/she will have a different 'take' on things than another - we all know this and so do they and it's bloody frustrating, but published studies on alternate diagnosis can make a difference if that knowledge influences entry criteria.
Yes you are 100% correct on this, However this is why guide lines are written that doctors are told that they must follow! The problem is that the guidelines that doctors are told to follow are wrong and do not require the doctors to test for common diseases that cause the symptoms being attributed to CFS.

The NICE guide lines state that this testing should be done

urinalysis for protein, blood and glucose
full blood count
urea and electrolytes
liver function
thyroid function
erythrocyte sedimentation rate or plasma viscosity
C-reactive protein
random blood glucose
serum creatinine
screening blood tests for gluten sensitivity
serum calcium
creatine kinase
assessment of serum ferritin levels (children and young peopleonly).
Clinical judgement should be used when deciding on additionalinvestigations to exclude other diagnoses.
1.2.2.4 Tests for serum ferritin in adults should not be carried out unless afull blood count and other haematological indices suggest irondeficiency.
1.2.2.5 Tests for vitamin B12 deficiency and folate levels should not becarried out unless a full blood count and mean cell volume show amacrocytosis.
1.2.2.6 The following tests should not be done routinely to aid diagnosis:
the head-up tilt test
auditory brainstem responses
electrodermal conductivity.
1.2.2.7 Serological testing should not be carried out unless the history isindicative of an infection. Depending on the history, tests for thefollowing infections may be appropriate:
chronic bacterial infections, such as borreliosis
chronic viral infections, such as HIV or hepatitis B or C
acute viral infections, such as infectious mononucleosis (useheterophile antibody tests)
latent infections, such as toxoplasmosis, Epstein–Barr virus orcytomegalovirus.

The faults in the NICE guidelines are very well explained in this article by Dr Mirza

He states

“The recent "NICE" guidelines in the UK like their sister guidelines from the U.S. Center of Disease Control (CDC) on this side of the Atlantic both miss the boat.

I have seen and analysed hundreds of cases of chronic fatigue over the past decade without ever having to use the term Chronic Fatigue Syndrome (CFS). The problem with these guidelines is that they either omit major causes of fatigue or make flagrant misguided mistakes such as the following “NICE” statement:

“Vitamin B12 deficiency and folate levels should not be carried out unless a full blood count and mean cell volume show a macrocytosis”. Vitamin B12 deficiency (or insufficiency) is extremely common even without macrocytosis. Macrocytosis is a very late sign of this vitamin deficiency. Furthermore, a concomitant iron deficiency, such as in celiac disease, would cancel out macrocytosis and the resultant mean corpuscular volume of the RBC would be normal.

The reference range of vitamin B12, at least in the USA is outdated and new reference ranges should be implemented (300-1000 pg/ml). It is very common to miss mild vitamin B12 deficiency without checking either homocysteine or methylmalonic acid or both. The latter 2 metabolites would be both elevated when serum B12 is insufficient. Even if B12 level is 300 pg/ml but homocysteine or methylmalonic acid are elevate, a diagnosis of B12 insufficiency should be made and the fatigued patient must be treated. Vitamin B12 is a very common cause of fatigue, malaise, dizziness and vertigo in people labeled with the diagnosis of CFS.

Vitamin D deficiency is extremely common above the latitude 0f 36 in the USA. It is even more common in Europe where milk is not widely fortified with vitamin D. The daily requirement of vitamin D of 400 IU a day is a thing of the past but still promoted as if written in stone. The recent research-supported daily requirement of vitamin D is at least 1000-4000 IU a day. 25 Hydroxy vitamin D should be between 32-100 ng/ml (see a recent NEJM review on vitamin D by Michael Holick).

25% of the US population have metabolic syndrome. Many of these have impaired fasting glucose or impaired glucose tolerance (IGT). These pre-diabetic conditions cause fatigue via glycosuria. Fasting glucose measurement is not nearly sufficient to detect early glucose intolerance. A 2-hr glucose tolerance test (OGTT) is abosoluitely necessary to detect IGT defined as plasma glucose of > 130 from 30 minute- 120 minute during OGTT.

Many patients with CFS have benign positional vertigo and they don’t know it. They are basically unable to describe their symptoms and for lack of expression they say they are fatigued. In one such case the Romberg test was abnormal and symptoms resolved within 7 minutes of application of the Epley maneuver.

I have yet to see a guideline on CFS that is complete. It is a good point that NICE mentions ferritin level, although I prefer iron saturation since ferritin is an acute phase reactant and could be falsely elevated during periods of acute illnesses due to any cause such as infection. Screening for celiac disease was also a good addition since this disease is relatively common in Caucasians (1% of populations with an average of a decade of late diagnosis due to lack of awareness). Addition of sleep apnea is also a step in the right direction. I also recommend addition of free T4 to TSH (at least once) so you don’t miss central hypothyroidism. Serum early morning cortisol should be measured in every patient with CFS. If a male person has sexual dysfunction such as poor libido and erectile dysfunction, muscle weakness and infrequent shaving of beard, a free testosterone by dialysis method plus LH measurement are necessary

In summary, for me a patient with CFS is a patient who has not been adequately investigated despite adherence to big- name guidelines of NICE and CDC. A thorough and guided investigation would yield the diagnosis in almost > 90% of patients.

By adherence to my own time-honoured investigation, I have succeeded in abolishing chronic fatigue syndrome from my medical vocabulary.”

References: Holick MF. Vitamin D deficiency. N Engl J Med. 2007 Jul 19;357(3):266-81

http://www.bmj.com/rapid-response/2011/11/01/chronic-fatigue-syndrome-nice-and-cdc-miss-boat

Personally as well as being in agreement with the views expressed in the above article by Dr Mirza, I also find this statement from the NICE CFS/ME testing guidelines particularly disturbing.

“1.2.2.4 Tests for serum ferritin in adults should not be carried out unless afull blood count and other haematological indices suggest irondeficiency.”

Hemochromatosis (Genetic Iron overload) effects 1 in every 250 Caucasians, the incidence of it is even higher amongst those of Scottish and Irish decent, affecting as many as 1 in every 100 amongst those of Irish decent.

This disease is a slow progressing illness that will present with symptoms that are often the same as those that the NICE guidelines states are the symptoms of CFS/ME. If not diagnosed early enough, it will lead to permanent organ damage and eventually death. It does not affect heamatological indices.

The above pronouncement from the NICE CFS/ME guidelines stating that ferritin should not be tested in adults effectively bans doctors from testing all adult patients for Hemochromatosis. All patients with the symptoms of CFS/ME should have full iron studies done, one to diagnose Hemochromatosis and also to diagnose subtle iron deficiencies, which do not affect haematological indices, this can then lead to finding the cause of the iron deficiencies e.g. mal-absorption syndromes, internal bleeding, parasites etc.

These are only very common causes of CFS like symptoms rarer disease such as MS, Wilson’s disease and Porphyria are not even mentioned in.

So the NICE recommendations are basically instructing doctors on how to misdiagnose patients with CFS, the CDC instructs on how to rule out other diseases are although you wouldn’t think it possible even worse than the NICE ones are!

Dr Mirza’s view on the CDC guidelines can be found here http://www.bmj.com/rapid-response/2011/11/01/myth-chronic-fatgue-syndrome

The reality is that many of the diseases that are not included on the NICE and CDC lists to be ruled out are so common, that a doctor wouldn’t pass their medical degree if they didn’t know that these diseases cause fatigue.

Personally I have great respect for Professor Julia Newton, anyone who has the good sense to check if the patients diagnosis is actually right deserves respect, as to the best of my knowledge she is the first person to do this kind of study, then I will leave it to your imagination as to how much respect I have for other people in this field.

However medicine has a major problem because it is divided into specialties, and a specialist in one subject, can have virtually no knowledge of other specialties. There are specialists in Diagnostics who train in be able to diagnose all diseases, they then hand the patients over to the right specialists for treatment. Unfortunately specialists in diagnostics are quite rare, and none of them have ever been asked for help in writing the differential diagnosis lists to rule out diseases that cause the symptoms attributed to CFS.

Professor Julia Newton specials interest is mainly in Gastroenterology see http://en.wikipedia.org/wiki/Julia_Newton If you take a look at the detailed accounts of what they found were the alternate diagnosis’s in the Newcastle study http://www.rcpe.ac.uk/journal/issue/journal_40_4/newton.pdfyou will notice things like they found no cases of Vitamin D deficiency. For those that don’t know the weather in Newcastle, it can only be described as appalling; it basically has two seasons, one month of summer and 11 months of winter. It is statistically impossible that out of 375 people who had CFS symptoms which are those of Vitamin D deficiency (which is caused by a lack of sunlight) who lived in Newcastle, that not a single one had Vitamin D deficiency. So I would say that the only possibility is that they didn’t test the patients for it.

One of the main points that Dr Mirza keeps emphasizing is the many of the reference ranges for test that laboratories use are out of date, scientific research has proved that they are wrong and yet the labs keep using them. Which means that the patients true diagnosis gets missed, and they then get diagnosed with CFS. I’m not sure that Professor Julia Newton is aware of this, 99% of doctors aren’t. I would have thought if she was she would have mentioned it as it is a very important issue.

In this book review by Dr MIrza, he explains it in more detail.

“I have rigorously criticized the concept of chronic fatigue syndrome and the government guidelines (CDC in the USA and NICE guidelines in the UK). I have published comments on these deficient guidelines in the British Medical journal.


In this book, there is not even 1 word mentioned about Celiac disease or vitamin D deficiency.


Chronic fatigue syndrome is just a fancy long term for what the patient already tells us: being fatigue for a long time. How can that be a diagnosis? A systematic approach to evaluation of fatigue is necessary. Most patients with chronic fatigue are not being evaluated thoroughly. Nutritional deficiencies, vitamin and mineral deficiencies, pre-diabetes, subtle thyroid diseases, subtle pituitary dysfunction, subtle changes in male and female hormones, are among some causes. Iron deficiency, or iron overload could be a cause. Positional vertigo, peripheral neuropathy.. etc.


The key is not to fall a victim to outdated laboratory reference ranges. On average, the key lab values in the USA are outdated behind new research by 17 years. Some values are outdated by a half a century.


I have evaluated over 5000 patients with chronic fatigue over the past 20 years, not even one has received the diagnosis of CFS. Chronic fatigue syndrome is a syndrome that has not been thoroughly evaluated.


A systematic approach to human body, with a full knowledge of physiology, metabolism, biological clock, sleep, and nutrition and evaluation of every organ system is the key to diagnosis.


My initial evaluation takes over 75 minutes, initial blood tests include more than 20 tests with more to follow based on initial screening. I challenge all the outdated reference ranges based on new research articles.


This book, despite a good attempt by the author, is just another deficient tool and again, is falling a victim to the dogma of CFS.”

http://www.amazon.com/review/R28ZY8OYSWP0R

I would like to see, Dr Mirza’s methods used on the Newcastle patient study group, I imagine the number of misdiagnosed would at least double.

Previously when I have posted these articles by Dr Mirza some people have come to the conclusion that he is saying that ME doesn’t exist. He isn’t, he is saying that CFS doesn’t exist. Because ME is and always has been a very rare disease it is possible that he has never seen a case of it. Because ME is not a recognized disease in the USA the only possible diagnosis he could give a patient is brain injury of unknown cause, which is what ME is.

So yes we should be campaigning for the likes of NICE and the CDC to be providing complete differential diagnosis lists for ruling out all the diseases that cause CFS like symptoms with up to date reference ranges, and that it is compulsory that all doctors follow these recommendations, if the recommendations are made public on the CDC and NICE websites then patients can see what tests they should be getting and if a doctor won’t test them correctly, they can then report the doctors for malpractice.

The vast advantage that advocating for this has over wasting time advocating for different names and definitions, is that it is based on medical fact, it is in the medical text books that these disease cause the symptoms attributed to CFS and therefore should be on the lists of diseases to be ruled out. We are dealing in facts, not a bunch of unscientifically proven theories that one name or definition is better than another. I also have no doubt that the likes of Dr Mirza and Dr Hyde, who also finds that a vast percentage of people are misdiagnosed with CFS. Would stand up in any court of law and be able to prove what they are saying, because they do have the patient case notes to prove it, and I’m sure many of their patients would happily testify as well.

I have raise this issue repeatedly with members of the US CFS advocacy groups who are responsible for this letter to the DHHS, I have asked Phoenix rising to put warnings that people may be misdiagnosed on the site, I have suggested that a list of the diseases that are common causes of CFS like symptoms should be made with links to medical websites that say how to test for these conditions, and that this should be displayed prominently on the PR website, and I have suggested that the Dr Mirza articles should be placed in a prominent place on the PR website to help the misdiagnosed in finding their true diagnosis, every single time I have been ignored.

So the answer to the question do I believe that the US CFS advocacy groups have compassion for the very sick people who are misdiagnosed and are doing their best to help them, and that they are serious about separating the ME patients from the misdiagnosed so they can be studied, or getting rid of ME and CFS being seen as the same disease, the answer has to be a resounding No. If they want me to change my opinion they will have to rapidly get their A into G and start doing something about it.

All the best
 
Hi Golden, RE

The ICC and CCC , I have just been reading , are just a mish mash of M.E. and C.F.S. criteria.

There definately needs to be protectiion on the pure M.E. diagnostic criteria.

If say it had been called Rabies , and was well established for years , then someone invented CFS ,

now we have a situation where we have rabies /CFS , CFS /rabies , lets get rid off rabies and call it all CFS or vice versa ...

And Everyone is being let down.

Now , my personal diagnoses may be either because I have not had the proper tests I am reading about ...which would diagnose M.E.

But I am feeling I cant just snatch the rabies label thinking its interchangeable with CFS ...

The REAL issue is to find those with M.E. using appropriate tests and then properly test other patients .

Its a scandalous situation
So what you are saying is that even though you are relatively new to this, is that you can correctly see the truth behind what is going on and that it could be described as a crime against humanity.

It really does make you wonder then why some of these so called experts and people who claim to want to help can’t get it.

The only reasons that I can work out why that they can’t get it, is that, in my opinion! some may either not have the IQ required for this job, or that the hundreds of millions of dollars that they are receiving from research grants etc, and the patients, might in some way be affecting some of those involved ability to think, in the way that is required for this task.

Good on you Golden, nice to have someone else on board who can clearly see what is going on.

All the best
 
Hi Urbantravels, RE

Yes, we know that an image change for the disease WOULD make a concrete difference in how it's funded.
It my make a difference to how it is funded, but the money would only be going to the same researchers who are more than happy to spend it studying mixed cohorts, the same as they have been doing for decades. The CDC and NIH had already received over 100 million dollars to research CFS since its invention to the year 2000. Which has achieved nothing. The problem is not a shortage of money it is that studying mixed cohorts achieves nothing.

I was wondering have you read this about Rituximab http://www.pharmalive.com/roche-pays-20m-settle-whistleblower-lawsuit

All the best
 
Hi WillowJ, RE

getting people to try to diagnose those with ICF (who are being wrongly diagnosed with CFS) with some actual disease instead of sloppily using some vague criteria or other is definitely a prime goal. That is why I think the category of CFS needs to be ended as soon as can be.

It would be a good idea if this is what is being proposed which unfortunately it isn’t, there is no attempt being made to get those with ICF or CFS properly diagnosed. They are not in reality trying to get rid of CFS, they want to use the CCC which says that ME and CFS are the same disease, and then just pretend it is ME, this is just a repeat of their attempts’ to get the ICD codes change to give CFS the same code as ME. They want CFS to be seen as the same as ME and called ME. This will help no one except the people who are making millions of dollars out of this mess.


the suggestion to use CCC (or ICC) is meant as an interim measure to at least step away from inclusions that are more broad (and include more misdaignosed people - the misdagnosed people is a concern of mine as well as the diluted sample preventing good science from being done in whatever ME is), as a definition using actual biomarkers is formed. We can always hope, right?
They only want the CCC which says that CFS and ME are the same disease, they do not want the ICC at all. The only real difference between the CCC and Fukuda is that the CCC says that PEM, which it doesn’t even define in a way that could be used by a doctor is supposed to be found in all patients, Fukuda says it is optional. They are both CFS definitions! ME is a neurological disease! PEM is a load of nonsense made up by the writers of Fukuda! Almost every disease causes a relapse of symptoms in patients that exert themselves. Anyone who doesn’t believe me go and talk to the people on forums for other diseases and ask them, or go into a hospital and ask the patients with other diseases if they get PEM, you will find that they do.

All this letter to the DHHS is about is a repeat of the attempts to get CFS the same ICD code as ME, They want to use a definition that says that ME and CFS are the same disease and then just pretend that it is ME. This helps no one apart from all the vested interest groups who are making fortunes out of ME a real Neurological disease, and CFS a load of rubbish made up by the CDC being seen as the same disease. They will never find biomarkers for ME by studying groups of people misdiagnosed with CFS

All the best
 
rlc
I'm not referring to points individually because I can't see the text once I've quoted it, in my dark theme.

did you ask the group who wrote the letter before you said what they intend to to? I think you probably didn't.

It's fine to say "it seems to me the result of action x will be y" but if you want to say "the intent of Group A (who took action x) is y" you should actually consult Group A before you say so. You don't know their intent unless you speak to (includes email/message and necessitates listening to) them.

There are many things which can be meant by "CFS". One [illegitimate] use of CFS is ICF. CCC and ICC clearly say that ICF is not ME. One meaning of CFS is a(n inappropriate) diagnosis given to people with ME. CCC and ICC says these people should be considered to have ME (or ME/CFS, but they explained at some later point that they included "CFS" in the name for political reasons and not because they consider CFS to be an appropriate or reasonable name or concept).
 
I am not sure that it's possible to complete an exhaustive list of exclusionary tests. Also there are some diseases which cannot necessarily be diagnosed in a single office visit (e.g. Lupus) but may take months or more.

So I still think the best precaution against misdiagnoses is to remove stupid broad criteria and diagnoses of exclusion so doctors aren't tempted to 'take the easy way out' and slap a diagnosis of CFS (or IBS or whatever) on a patient for no good reason.

I would almost endorse an initiative which left us all diagnosed with nothing until we get things straightened out, but I think that could have nasty implications as far as testing, treatment, and benefits. I don't want anyone to starve, end up on the street, or go without medicines which are currently keeping them ok.
 
I suppose everyone knows this already !

But i just found this:

http://m.hfme.org/site/mobile?dm_path=/problemswithmecfs.htm&fw_sig=b11a9d14cdb868e6cdf20b3155ee35d9&fw_sig_url=http://www.hfme.org/&fw_sig_session_key=b50ffabe87a0b3bf22c7a8592c87e91368863aada8974958e3ec17a944a8120c-41924925&fw_sig_time=1371137982850&fw_sig_permission_level=0&fw_sig_tier=1&fw_sig_is_admin=0&fw_sig_social=1&fw_sig_site=41924925&fw_sig_potential_abuse=1&fw_sig_access_token=a9e1727ace4988b58e4fa648559b0b41e8820661&fw_sig_permissions=none&fw_sig_api_key=522b0eedffc137c934fc7268582d53a1&fw_sig_premium=1&fb_sig_network=fw#2021

M.E. is a brain virus with onset of 4-7 days of infection. It has similar patterns and bio markers.

t is sudden onset only .

Since I have never been given MR/CT scan......I can not confirm M.E. in myself.

C.F.S. is a collection of Major missed diseases !!!! Since I have never been tested for lupus , lyme etc.etc. If it is not M.E. I have I do not know which major illness I have ...

It is a lose lose situation. Having CFS joined to ME does a disservice to ME people...

And having CFS means the real diagnoses has not been found.

This is very helpful too me as for the first time I feel clearer on the subject .

This is my current new thinking on the subject. I no doubt am wrong .

Going to research more .
Hi Golden,

That site will certainly present you with a very clear, very definite position on the subject - I won't say it is a simple picture but it is certainly one that will make you feel a lot clearer if you believe it all.

I know it's very comforting to feel less confused and have a clear position on a complex subject, but the question really is whether the detail presented is true, and I think you should now ask: what evidence is presented in support of the claims that are made, what evidence is there against them, what do other people say about this picture who disagree with it, and why is it, if things are this simple, that so many people - researchers, physicians, organizations and patients - don't accept it? Is it because they are all dumb, or ignorant, or mischievous, or have vested interests, or might there be some other reason?

Now don't get me wrong, I do not want to dismiss everything said on that site out of hand - far from it. Actually I think I - and perhaps most members here and most of the ME/CFS orgs - would agree with the core themes: lots of missed diagnoses and other syndromes confounding the definition, broad definitions fatally confounding the situation, a severe and disabling illness lost in the wastebasket of missed diagnoses and other syndromes, important historical findings discarded and ignored and never followed up - these issues and indeed all the other themes are things which pretty much everyone agrees on. Where the differences lie, then, are in the details. Are the details presented true, and are they proven?

rlc made a point above with which I largely agree: many of these hypotheses have never been adequately followed up, researched, tested, and they deserve to be. But by the same token, that is why they are not proven, that is why they are not universally accepted, and that is why I don't regard the contents of the hummingbird as gospel. All the points made there need to be subjected to critical analysis, and ultimately they all need to be tested and scientifically proven. And also it's worth noting that the same failure to adequately follow up research applies to ME/CFS findings such as NK cell dysfunction, other immune abnormalities, exercise testing, and on and on - and indeed it is true of a lot of medical science; replication doesn't happen nearly often enough. So the difference is not in the overall picture presented, really, but in the details.

We have indeed spent many, many hours on this forum trying to find consensus and agreement on these issues, but in the end I think everybody on those threads who engaged with the arguments presented by rlc and others found some areas where there were good points made - some of us modified some of our views and learned something along the way - but we were unable to reach the only consensus agreement between the two camps which seemed to be on the table: complete acceptance of the gospel according to Hummingbird. That's a very harsh way to put it, I know, and perhaps a little unfair, but I think most or all of those from 'the ME/CFS side' who engaged in that exercise would at least broadly agree with that characterization. Now, this would actually be fully justified and correct if that gospel is the absolute truth, it really would. It may be, but I am not convinced that it is.

One thing for you to consider is, assuming this is true, what can you do about it personally for your own illness? Well, you would need to find a physician who either agrees with all of this or who is willing to fund - or let you pay for - all of these tests. Unfortunately, you will find that difficult. There are probably some tests in the list which you can get hold of, so it would be a useful starting point to ask your physician about some of them. They may even give you a new diagnosis, though in many cases you are liable to find (as some others here have found) that the new diagnosis is another mysterious and untreatable syndrome, or that you get it treated and find that you still have ME/CFS afterwards, either with the other condition gone, or not. In the case of other tests, you will find that almost nobody accepts the right version of the test, or that they are common standard tests that you test negative for but hummingbird tell you that everybody else is using the wrong version of the test, or interpreting it wrongly, and you need it done differently. If you want the definitive test that tells you whether you have ME or not, you will need to find a physician that does that test in the right way, and interprets it correctly, and that also will be very hard to find. And you might want to ask at an early stage: if you do find that physician who will do that test and you pass it and have ME as hummingbird defines it, what then is the treatment and what is your prognosis? What is the cure or treatment for ME?

Another question for you to ask is for a full list of researchers and physicians, worldwide, who agree with hummingird's interpretation of ME and of the exclusionary tests, and who will perform them for you, and how much this is likely to cost you. I think you will find that it is a rather short list, and that all these tests can be extremely expensive. Ask how much it would cost to have all of them done - after all, if they all come back negative, you have to go through the whole list until you know for sure, so the total cost could be quite high if you don't strike gold early on.

Now, that's perhaps a harsh picture I've painted once again, so I'll back up and say that there are some very good points in here that you can make use of and there are some very good points that rlc has made - a focus on exploring alternative diagnoses in detail and recommending testing strategies for them should be a greater focus for a site like PR than it is, IMO, and that is something I hope we will be working on rigorously in the coming months (it's a massive job, unfortunately, and we aren't exactly short of work or over-staffed). If you haven't had B12 levels tested then that's worth doing IMO although in my case my GP said they were absolutely normal, a private test went into more detail and said they weren't, and B12 supplementation did indeed help somewhat. If you haven't had coeliac disease testing then again they should test for that - Esther Rantzen's daughter was a famous ME case for many years and many advocates very much disliked the line that Rantzen took on ME; a year or two ago her daughter was diagnosed coeliac and 'didn't have ME after all'...well advocates had been making this point about the need for full testing for some years so this raised some eyebrows to say the least...anyway I'm not sure whether she has now recovered fully or whether she is still ill.

But I can think of at least one person who was diagnosed coeliac and had it treated and found that they still had their other symptoms afterwards, and another who found that they didn't respond to treatment and still had their symptoms afterwards - as with many of the tests listed, it is unclear whether it is a common co-morbidity, a common byproduct of ME/CFS, exists in atypical forms in ME/CFS patients who may have coeliac disease but fail the standard tests, or all of the above. And yes, for sure, there are also some coeliac patients misdiagnosed with ME/CFS. The same with Lyme and chronic Lyme. See Joel's excellent article on this and his series on zoonotic pathogens to see that in all these illness medicine has its grey lines of incomplete knowledge and you can fall outside the standard tests but may still have something related covering your condition. There are physicians who test for many of these conditions, and treat them, and there is a lot of truth in the importance in pursuing these issues, but unfortunately the experience of most forum members is that doing so has not solved all of their problems, though it has indeed solved them for some people and improved the health of others.

So really all I would say is, approach this critically and questioningly and look for evidence: look for the proof of the brain virus, look into its name, how the virus is tested for, and what treatments are available for it, find out all the possible places you can go to get this protocol enacted and how much it might cost you, and when you have the list of physicians and researchers who agree with the whole theory, and who understand what's really going on, compare and contrast with the remainder who don't, and what they say about the details, and then I guess you pays your money and takes your choice. If you conclude that all the ME/CFS researchers and physicians really are ignoring the other tests and can't give a good explanation as to why, and that they are just all getting it wrong and missing the point because they are making huge amounts of money in this highly lucrative and well-funded field of ME/CFS research, then I guess you need to find one of those physicians that hummingbird can put you onto who understand ME and CFS, and find the cash to pay them. But compelling though the picture is, and even though it has many elements of the truth in there and a huge amount of detail, I would advise you not to take it as fact until you have thoroughly explored the evidence - as with everything, of course. Not simple I'm afraid, not clear, not easy, but then, often life isn't, unfortunately.
 
Hi Mark, RE

a focus on exploring alternative diagnoses in detail and recommending testing strategies for them should be a greater focus for a site like PR than it is, IMO, and that is something I hope we will be working on rigorously in the coming months (it's a massive job, unfortunately, and we aren't exactly short of work or over-staffed).
This does not have to be the “massive job” that you are under the impression that it will be. Displaying a permanent large warning that people may be misdiagnosed in a Very prominent place on the PR site is very easy to do. The links to the articles by Dr Mirza are in my posts in this tread, and it will not take much effort to place them with the warning that people may be misdiagnosed.

I recommend that Phoenix Rising contacts Dr Mirza and asks if he would be willing to compile a more detailed list of diseases that should be ruled out, with the tests that are needed and what the correct reference ranges are. The patients could then take this information to their doctors and because it is coming from Doctor Mirza who is the Assistant Professor of Internal Medicine at Auburn Community Hospital, Auburn New York, it is very likely to be looked at by the patient’s doctors.

Judging from the obvious passion that Dr Mirza has for stopping people being misdiagnosed with CFS when they really have other known diseases and are suffering needlessly. I would say that there is a very high chance that he will help. This information could then also be sent to Kathleen Sebelius US secretary of the DHHS, asking her to investigate why the CDCs recommendations are so limited in comparison to Dr Mirza’s.

Dr Shirwan A Mirza can be contacted at

Auburn Community Hospital auburn New York

17 Lansing Street Auburn, NY 13021

Office Phone: 315-253-2669

And

Diabetes, Metabolism & Endocrinology

399 Grant Avenue Rd Suite 1

Auburn, NY 13021

(315) 253-2669 (Office)

(315) 282-0077 (Fax)

This information can then also be put on the websites of other CFS advocacy groups such as PANDORA, Chronic Fatigue Syndrome, Fibromyalgia, & Chemical Sensitivity Coalition of Chicago, Chronic Fatigue Syndrome/Fibromyalgia Organization of Georgia, Inc. The Fibromyalgia-ME/CFS Support Center, Inc. The Rocky Mountain CFS/ME & FM Association. Speak Up About ME, Wisconsin ME/CFS Association, Inc. As these advocacy groups are closely connected to the CFIDS Association of America they could ask them to put the information on their website. This would be extremely easy for all these advocacy groups to do, because all they would have to do is put a permanent large warning on their websites that people maybe misdiagnosed with a link to the information on the Phoenix Rising website

As the CDC refuses to do anything about their feeble recommendations on how to rule out other diseases that cause CFS like symptoms, then the US advocacy groups must do their utmost to solve this problem, or else many thousands of people will keep suffering and dying needlessly.

As some of the conditions that are misdiagnosed as CFS are life threatening, I think that Phoenix Rising should priorities this above whatever other projects are taking up their time.

This is literally a matter of life and death and should be attended to immediately!!!!!

All the best





 
snowathlete: Great post, thanks for that. Worth a response in some detail I think...


So can I, actually, even though I've been arguing one side on this thread. I think there are some valid issues there, but the practical question right now is whether to get behind this initiative or not. On balance I'd say there's much more good than bad in this, and while there's room for improvement in future, the most important thing to me is for as many people as possible to get behind a positive initiative, even if it doesn't give everything that everyone wants.



Crucial point. The word 'consensus' is key for me: it implies a degree of flexibility and compromise. Getting lots of people together gives you the potential to achieve something. As a community, we sometimes spend far too much time focusing on the details that we don't like and not enough getting behind positive, though imperfect, projects. There's always something there to be found to criticize in anything; nothing's perfect. But we need a mass movement if we're going to apply pressure effectively, and a mass movement has to unite a lot of subtly different perspectives under one 'big tent'. I believe that realization is dawning on a lot of people in the ME/CFS world and we're all starting to work together a lot more effectively. It's very hard work to make that happen, but it is happening.



Another crucial point. The landscape is always changing, and you build gradually on what came before. I'm personally not really expecting the details of the letter to all be implemented without further discussion, that doesn't seem likely to me no matter what you ask for, and even if it they were, it wouldn't be the end of the story or the end of campaigning. The point for me is to apply pressure and set out a clear vision of the direction you want to go. One way or another we have to get away from broad and useless case definitions and we need that as soon as possible, in order for that case definition to then evolve in a meaningful way. The CCC obviously isn't the final word, neither is the ICC. The point is to make progress rather than standing still; it's a process and a conversation, not something set in stone for all time.


The pressure may seem more positive from where you're sitting them where I'm sitting, to be honest :D ; I haven't really learned about any problems that I wasn't already well aware of and trying to work on, what I need is ideas and solutions and time and help to implement them. But I honestly do agree with you that some of Ember's questions are quite appropriate, and it's right to ask them. I wouldn't have spent so much time trying to answer them if I didn't, and I think there are some points in there which need some work.

Particularly in terms of how Phoenix Rising interacts with this whole process, that's the main thing that needs work, for me - there is a big and very important discussion to be had there and I believe we have the potential to contribute a lot in that area. I really don't want this thread to be about all that, because right now we want to focus on the petition and the campaign itself, rather than navel-gazing about how we make decisions as a community. But we honestly do want to have that discussion on how we can find a way for the community to engage with this work - honestly, the board doesn't want to have to make these kind of decisions on its own. The big problem there is that most of the work in these kind of initiatives just doesn't make much sense as open, public discussions. When you see letters signed by loads of prominent people and sent to newspapers, or governments, you don't see those letters being discussed and thrashed out in public before they're sent; most of the time that kind of process would undermine the whole effort. For impact, you sometimes need those things to be unveiled like a press release. Petitions are different; everyone can start them and everyone's free to sign up, or not. So part of the problem for PR is that we don't have elected representatives who can then work on advocacy efforts in confidence with a range of other groups. Other groups tend to work rather differently and they don't have public forums like ours for this stuff, so we're in a rather unusual position. We want to work with other groups, and our members have said they want us to do that, but the details do get complicated. We're still trying to figure out how all that might work.

And the whole question of CCC vs ICC is a totally legitimate question. That wasn't a straightforward or immediate question, and there's a range of views on it. In fact, personally my first instinct was for the ICC, but I was persuaded by the argument that the CCC has the benefit of a longer history of being used in practice - both clinically and for research - and the ICC would need more research, validation and momentum to be a practical target for this particular campaign. In the end, it's not just my point of view though, it's what the broad consensus is. I think part of the problem here is that for some in our community it feels strange that the conclusions of more than 6 months work kind of appear from nowhere, and the discussions that we now suddenly begin are the same ones that have been going on behind the scenes for some time. That's strange for us, because as I say, we're unusual in having this forum model of membership (and no formal membership or subscription scheme, at least not yet); it's not so strange for the other groups involved. I'd like to think that if we'd discussed all this openly we'd have all reached a consensus that everybody can unite behind and there'd be no more arguments or dissent at this point - but realistically I rather doubt that would ever be the case. There are always people with opposing views who just aren't ever going to compromise; you can't please all the people all the time, as hard as you may try...


I do think we've tried really hard to answer people's questions; I know I have and it's taken a lot out of me at a very busy time. Some of them have been really tough to answer, either because I didn't know all the answers on points of detail about the process, or because I've needed to check with others on what aspects were confidential or needed confirmation. It's also never easy to answer on behalf of a group, on behalf of a consensus process, and explain the rationale for decisions, especially when your individual answers are being taken as if they represent the opinion of the whole group, as if there were some simple and well-defined 'groupthink' opinion rather than the result of a process. And there's been CFSAC, and Invest in ME, and lots more besides going on at the same time, but people don't see all that other work and often want answers to their questions right away.

So your analogy with Unger's response to the community is a good one, but I'd just add that medfeb and I are just individuals too, in the context of the advocacy group, and indeed Unger is an individual within her own context as well; none of us have the power to make everything the way we want it to be, and none of us can fully represent the opinions of everyone in the group, even if we're seen as speaking on behalf of the group.




As above, that's not just up to me, but I do want that engagement and that chance for input as much as possible. If we'd had a better response to our appeal for people to join an advocacy group, we'd have set that up and those people would probably have been involved in this process, so in that sense there was an opportunity to be involved which wasn't taken up. We did join this particular process a bit late in the day, and it has never been a public discussion for the reasons I mentioned above. It is really hard to figure out how it ever could be, but believe me, we are all listening to the points made and trying to figure out a way to get that involvement. I will say one thing though: there has never been any barrier to people contacting me and offering to get involved in the work on this or on anything else. The people who do all this stuff are the people who have volunteered to do that work, and we do want lots more people to join the team and help out with that. Very few people seem to want to be involved at that level; they generally want to spend a few minutes making comments or suggestions but don't have the time and energy to think through all the ins and outs, but when you're spending 6 months discussing complex issues with a large number of other representatives, a degree of commitment is necessary to work through all those issues. But anyway, figuring out a way to canvas opinion without compromising embargoes and confidentiality, and how to give a clear route to engagement in this process for PR members, is very much on the agenda.



Absolutely, and amen to that! If you want to work as part of a team, that's an essential requirement.

Mark, this was a great post and I agree 100%. Thank you and PR for your work on all this.

Fwiw, I was first made aware of and presented with the letter after it was basically finalized, though Mary did ask me if I had any input. I said no, because I agree with it more or less entirely.

I do think it is extremely important for all of us to get together behind advocacy efforts as a united front. I don't want constructive debate stifled, but I am learning that the way to make political change, which is what this is, is to apply united and maximum pressure with a consistent message.
 
Morning Firestorm, RE



Actually we can!

The reality is that the number of diseases that cause CFS like symptoms is limited, yes it is a large number over a hundred. But all of these diseases could be diagnosed by around 40 blood tests and a few imaging tests such as MRI or ultra sound.
Hi ric. I'd like to say that one cant always rule out all the other things as many illnesses can be very hard to diagnose or a certain percent with certain illnesses are commonly missed by our normal tests the doctors do even when trying to rule out a certain illness..

eg take chronic lyme for example (or other tick illnesses), it is known that the lyme tests arent always accurate and hence even if a test has been done, it could be being missed. I still wonder if I could have lyme thou Ive had two lyme tests done(as I have almost every symptom on the lyme lists and have had tick exposure too).

I also wonder if I have celiac disease which didnt show up on the standard test as I have a lot of celiac disease in my family and DO have the genotype for it (doctors gave me that test to try to rule it out but it turned out I carry it). I could be in the 10% of causes in which celiac disease doesnt show up on the standard blood test. (So the only way to rule that out for me would be a bowel biopsy, something which doctors arent willing to do).

I also wonder if I may have Systemic Mastocytosis.. which is another illness which is in my family and which too can be genetic link with. I tested negative on a standard blood test but that apparently can miss cases of it and my uncle with Systemic Mastocytosis (and hence is quite an expert himself in this rare disorder) has told me I should have a bone marrow biopsy done as its more likely to pick it up (but even then it can be hit and miss if the sample ends up being taken from an area which has less mast cells). *Note that uncles daughter has ME symptoms just like my own but her father and she thinks she has Systemic Mastocytosis and hence she's never been diagnosed with ME. Try finding a doctor thou willing to do a bone marrow biopsy on me to try to rule that out more.. its near impossible. (I have had a darier sign and used to get Dermatographia ..both indications of Systemic Mastocytosis.. othostatic hypertension with POTS..both of which I have, are also strong signs of possibly having a mast cell disorder)

Anyway.. in my own case, things have been extremely hard to rule out due to the complex tests (biopsies and bone marrow sample)which would be needed (and even then its not guarenteed to be picked up). It is very possible I have any of those 3 things. I may also have an inherited mitochrondrial disorder too as my family history and also in my own history too may point to that, screaming red flags if one reads the info from mito experts in inherited mito disorders...

If one is going to rule out every thing in all ME/CFS patients, it probably would send our health systems bust (and a lot of these alternative diagnoses arent easily fixable either eg chronic lyme, systemic mastocytosis....

I do agree thou with you that doctors do need to do more testing of ME/CFS people.. but at what point does one stop (this is something Im asking myself over the lyme and tick testing.. I had Morgellon's in the past with my ME.. and a recent study found people with that had Borrelia on lyme testing).

Till there is a test for ME which proves one has it, there will always be some people being wrongly diagnosed as there are too many complex diseases out there which affect so many different body systems. The amount being wrongly diagnosed must be more then what Julia Newton found.. allowing for things which even she missed.