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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

Nielk ,

Its as simple as the top ME Doctor Hyde suggests , not Ric . He has seen thousands of patients . MRI scans are no good . SPEC scans when ill should not show normal. MRI scans can cause ME patients to seriously relapse due to noise and look normal.

This should be done soon into the illness . Plus biomarkers and history equals Bingo .
 
Hi WillowTree, RE

In the aftermath of the 1984 Incline Village ME outbreak, some researchers developed the THEORY that this post-infectious outbreak was caused by the Epstein Barr Virus. Thus they named it Chronic Epstein Barr Virus Syndrome. When their theory did not pan out, instead of doing further research to find out what was really happening with these patients, they simply renamed it Chronic Fatigue Syndrome, with all of it psychiatric implications. Thus began the almost 30 year downward slide into confusion, misunderstanding, abuse and neglect of ME patients.
Epstein Barr Virus and other members of the Herpes Family were ruled out as the cause of the 1984 Incline Village ME outbreak by the CDC before CFS was even invented.

The CDC investigation of what happened at Incline Village is called A Cluster of Patients with a Chronic Mononucleosis- like syndrome Is Epstein Barr the cause? Published in May 1987. See http://jama.jamanetwork.com/article.aspx?articleid=365861

It states that

“A cluster of 134 patients who had undergone Epstein-Barr virus (EBV) serological testing because of suspected chronic EBV syndrome was investigated in Nevada. Fifteen case-patients were identified who had severe, persistent fatigue of undetermined etiology for more than two months. When compared with the remaining 119 patients who had less severe illnesses and with 30 age-, sex-, and race-matched control-persons, these 15 patients had significantly higher antibody titers against various components of EBV and against cytomegalovirus and herpes simplex and measles viruses.”

15 out of 134 patients proves that Epstein Barr Virus did not cause the Incline Village Outbreak!

RE

they simply renamed it Chronic Fatigue Syndrome, with all of it psychiatric implications.
There is nothing about the original Holmes 1988 CFS definition that is Psychiatric. The symptoms that patients had to have included.

“Physical Criteria

Physical criteria must be documented by a physician on at least two occasions, at least 1 month apart.

1. Low-grade fever - oral temperature between 37.6° C and 38.6° C, or rectal temperature between 37.8° C and 38.8° C.

2. Nonexudative pharyngitis.

3. Palpable or tender anterior or posterior cervical or axillary lymph nodes. (Note: lymph nodes greater than 2 cm in diameter suggest other causes. Further evaluation is warranted.)”

It is not the CDC that have said that ME and CFS are the same disease, They have made it very clear that they are not the same disease. The view that CFS and ME are the same disease, and that the CDC had renamed ME, CFS has been promoted in the US by the likes of the CFIDS association, PANDORA and self proclaimed CFS doctors. Who have failed to take the opportunities for effective advocacy to help ME patients, based on the fact that the CDC has said that ME is not CFS, that ME has had a ICD code in the US under its US name Epidemic Neuromyasthenia. They have failed to point out to the government the fact that the 1994 Fukuda CFS definition is a research definition, which means that doctors should not be diagnosing patients with a research definition. They have failed to advocate on the fact that the NIH appears not to, since the Incline village investigation allocated a single cent for ME research. They have instead advocated that more money should be spent on CFS research. They have not advocated that ME which has been recognized as a separate disease in the US ICD codes under the US name for ME Epidemic neuromyasthenia should be researched in the US and that doctors need to be made aware of it. Instead they have advocated that CFS should be called ME. They have in recent years advocated that CFS should have its ICD code changed to be the same as ME, and are now advocating that the CCC that says that ME and CFS are the same disease, should be used to diagnose patients, and that we should just pretend that it is an ME definition.

All of which has allowed the CDC and NIH to not investigate ME, and has got them off the hook for not doing intensive research into the epidemics in the US in the 1980s in places such as Incline Village and Lyndonville, because the US advocacy has not been intensivly demanding that they do this! Instead they have advocates telling them to spend more money on CFS, and asking them to call CFS, ME.

As the CFIDS association and Pandora have been on good terms with each other, and the CDC and CFIDS association are so close that the CFIDS association has even employed Susan Vernon, who has worked for years at the CDC with the past and present heads of the CDC CFS department, DR WC Reeves, and EG Unger.

I m not accusing anyone of anything, but one can’t help wonder if it is pure serendipity that the policies that so many of the US CFS advocacy groups have advocated for, put no pressure on the CDC to do something about ME?

All the best
 
I just finished watching the video "Voices from the Shadows," produced in the UK to tell the story of patients severely afflicted with ME and the lack of care they receive in addition to the stigma and disbelief from others they must endure. The issue of the case definition is brought up. Professor Malcolm Hooper from the University of Sunderland, one of ME patients' greatest advocates in the UK, appears throughout the film. This is what he said about the definition, and I quote directly:

" For me, the important description of ME is that it is a complex, chronic, multi-system illness. And that's reflected in the very best criteria for diagnosing and understanding the illness -- the Canadian Criteria. The Canadian Criteria: clinical consensus, drawn up by clinicians from North America -- from Canada and the U.S. -- and from Europe. So this represents a profound understanding of the illness from clinicians who are engaging with it on a daily basis. There's thousands and thousands and thousands of hours of patient care, and patient monitoring, and patient testing reflected in these criteria. And the fact that they are not being adopted is of great concern to me and to people with ME. The Canadian Criteria are for clinicians, by clinicians, and clinicians need to use them to examine their patients."
 
Hi Nielk, RE

Hi Ric,

I have no problem with you or anyone showing different point of views. I feel that it is useful and informative especially when it is backed up by science, but the above statement is slanderous and false.

To state that experts/people who don't share your view have a low IQ is undignified.

To state that "they" receive hundreds of millions of dollars from research grants is a gross misrepresentation.

You make it sound like this field is full of charlatans who are out to make it rich on all the grants that are being thrown around. The reason why we are fighting so hard for awareness and advocacy is because of the opposite. No one wants to give us any funding, including the US government.
Up to the year 2000 the CDC and NIH had spent a combined total of 102.3 million on CFS research as stated in June 2000 GAO Report to the Honourable Harry Reid US Senate.

http://books.google.co.nz/books?id=_oeytNhkHBQC&pg=PP1&lpg=PP1&dq=June+2000+GAO+Report+to+the+Honourable+Harry+Reid+US+Senate.&source=bl&ots=fvb2_yWwIX&sig=aEJi6dhZBH57dOMuIdnm2-FmPOk&hl=en&sa=X&ei=Ymy_UamWLevQiAeejoCoBA&ved=0CC8Q6AEwAQ

A similar level of funding is still going on today, and much more funding is now coming from other sources such as 10 million from the Hutchins foundation for the Chronic Fatigue Initiative project.

It would be appreciated if you got your facts right before accusing me of “a gross misrepresentation”

I am entitled to, and legally allowed to express an opinion, that if researchers have spent so much money over so many years and have yet to come up with anything substantial to resolve the suffering of the patients, that the people involved may not in my opinion have the sufficient mental power required for the job, for your information it is called freedom of speech.

So when you state

but the above statement is slanderous and false.
It is you that are false and are slandering me, because you have not spent the time to find out the true facts about how much money has been spent on CFS research since the mid 1980s.

I kindly ask you to remove these allegations from your post

Thank you
 
There is nothing about the original Holmes 1988 CFS definition that is Psychiatric.
I agree with you, Ric, about this. The original Holmes 1988 CFS definition ALSO does not talk about "chronic fatigue," which is different from Chronic Fatigue Syndrome. However, the use of the name Chronic Fatigue Syndrome started a very slippery slope, the effects of which we are still suffering from today. By the way, Stephen Straus, the scientist in charge of the Epstein Barr theory and research at the NIH, was the first one to use the phrase "chronic fatigue syndrome." When his research didn't pan out, he concluded the illness must therefore be psychiatric. From almost the very beginning, CFS was made fun of by the very researchers at the CDC who were supposed to be studying it. Many medical doctors do not believe it exits. Family members and friends can't believe we are disabled as "Everyone suffers from fatigue," plus we don't look sick. Chronic Fatigue Syndrome in many peoples minds was reduced to chronic fatigue, which is a classic symptom of depression. Hence, these people are depressed -- give them antidepressants and psychotherapy! Researchers who tried to study it were made fun of. Even today, researchers trying to get ME/CFS grants approved at NIH are met with resistance by the Special Emphasis Panels set up to review these grants as they are skeptical about it and have hardly any knowledge of it. As time went on the CFS definition was further diluted, as by your Oxford Definition and the CDC 's Empiric Definition, to include just "chronic fatigue" which brought in a lot of people suffering from depression. And this brings up your very point about mixed cohorts leading nowhere for 30 years. That is exactly what happened. We went from the study of a post-infectious syndrome, which is what ME is and what happened at Incline Village, to this mess. Some say, this is how a disease was made to disappear. We want this stopped. That is exactly the point of this petition. We want ME recognized in the US and research dollars put into it so that effective treatments can be developed. We want to turn around the harm "this mess" has done and continues to do to people who are already very sick and have had their lives shattered by this devastating disease. We want some compassionate, effective care given to them, and their dignity restored.

Forget epidemic neuromyasthenia. I wonder if this term has ever been used by any doctor in the US, at least not in recent times. I believe myalgic encephalomyelitis also appears in the ICD codes in the US in the neurology chapter, but it is rarely if ever used here. It isn't even taught in medical school. If you mention it to a doctor, they don't even know what you are talking about. Yet, there are many people with ME in the US. I have the diffuse brain injury as described as classic ME by Dr. Hyde. This was established, among other ways, by a QEEG which I had done by a neurophysiologist who specializes in treating closed head injuries/damages to the brain. I have been one of her patients for many years. This metabolic encephalopathy has a distinct pattern that she recognizes as ME/CFS. She has many other patients just like me. She tried to get her work on this published, to no avail. No publishers would accept it -- again the prevailing prejudice in this country against ME/CFS. I fit all the ME definitions from Ramsay to CCC to ICC. We are working to get ME recognized in this country. I see more and more researchers dropping the ME/CFS and are now using ME in their writings and when giving lectures, and they are not talking about chronic fatigue or the diluted chronic fatigue syndrome! Some patients, including myself have refused to use CFS any longer. I am only using ME, which at this point in time is the correct name for the illness from which I suffer. Change begins with one step at a time.

I also wish all the best to you, Ric. May there be better days ahead for all of us.
 
Hi Willow tree, I agree with large amounts of what you say.

However when you say

Some say, this is how a disease was made to disappear. We want this stopped. That is exactly the point of this petition. We want ME recognized in the US and research dollars put into it so that effective treatments can be developed. We want to turn around the harm "this mess" has done and continues to do to people who are already very sick and have had their lives shattered by this devastating disease. We want some compassionate, effective care given to them, and their dignity restored.
I do not agree that this is point of this petition, the CCC says that ME and CFS are the same thing, it says that patients have to wait six months before they can be diagnosed, any disease that you have to wait six months to diagnose, is simply not a disease. The CCC defines a Fatigue disease, not a Neurological one, you say that you “have the diffuse brain injury as described as classic ME by Dr. Hyde. This was established, among other ways, by a QEEG which I had done by a neurophysiologist who specializes in treating closed head injuries/damages to the brain”

So why do you want a definition that is a fatigue definition, not a diffuse brain injury definition?

I very much understand that people with a diffuse brain injury want ME recognized as a real disease by the medical community. But the CCC does not select exclusively patients with diffuse brain injuries, which means that if research is done on patients selected with it using QEEG and SPECT scans then they will come to the conclusion that as not everyone tested failed these scans, therefore ME can’t be a diffuse brain injury! Which will leave people like you who have been tested being told you don’t have ME, and means that these kinds of scans will not be recommended to be used to diagnose ME, which will leave people in the same situation as they are today, where it is very difficult and in the majority of case impossible to get these scans done, and get scientific proof that they have a diffuse brain injury.

I totally support people who have a diffuse brain injury of unknown cause being recognized as ME patients, until more research has been done to find the cause or causes in which case better name/names may be appropriate. But using the CCC which does not exclusively select patients that have a diffuse brain injury will only keep the waters muddied, as they have been for so long. The CCC is a fatigue definition that states that ME and CFS are the same disease. If it is adopted in the states, and people pretend that it is an ME definition, what this will mean is that in the US ME will be recognized as a fatigue disease not a diffuse brain injury disease. Which is factually incorrect, and will not help you, or all the other people who really do have a diffuse brain injury.

Unfortunately the US CFS advocacy groups have since the beginning refused to use the opportunities that have been available to them to get ME researched properly and instead spend their time doing things like trying to get CFS the same ICD code as ME, which does nothing for ME patients.

You said

She has many other patients just like me. She tried to get her work on this published, to no avail. No publishers would accept it
You may find this statement which can be found in his letter here interesting http://www.co-cure.org/audits.htm#Hyde

He states

“Is There NIH Obstruction in Publications on M.E./CFS?

Let me ask a few other questions: Should a senior member of the NIH granting body sit secretly on certain peer review medical journals such as the New England Journal of Medicine and others and refuse publications of CFS physicians who are not part of his "team"? It is my opinion that NIH officials should state on which peer revue journals they sit and hold influence.”

I to would like there to be better days ahead for all of us. But I do not think that the actions of the US CFS advocacy groups will be the ones that get use to those days.

All the best Willow Tree
 
Hi Snowathlete, RE

I'd like to see some kind of comprehensive article on conditions that should be excluded, what they are, how you should go about that, etc. It needs to be pitched right for people with ME/CFS though and point to other more detailed data elsewhere, etc. Maybe you should blog about it? Or do an interview with Dr M. I'd read it!
If I write a blog about it, all that will happen is that it will get lost amongst all the other posts in a very short period of time.

I have however asked Mark of the Phoenix Rising Board in post 138 on page 7 of this tread, to get Phoenix Rising to contact Dr Mirza, for whom I have provided the contact details, and ask him if he will contribute a extensive testing recommendations list with up to date reference ranges, that can be made available on the phoenix Rising site with large warnings that people maybe misdiagnosed, and have explained that this information can also be made available on all the US CFS advocacy groups websites, and that it can be sent to the likes of Kathleen Sebelius to show how inadequate the CDC recommendations are and ask for them to be changed.

It appears to me that, Mark has developed the same selective blindness that I have encountered from the Board of Phoenix Rising over the years, every single time I have raised this issue, and they has failed to reply. No doubt the excuse is that they are oh so busy, however as the Phoenix Rising projects that are listed here http://phoenixrising.me/about/projects and the endless stream of articles produced by the Phoenix Rising team none of which provide any information on how people should avoid being misdiagnosed with CFS, do not actually do anything to help stop people being misdiagnosed with CFS, I did state that this is a matter of life and death and that it should be prioritized above everything else.

I have since then noticed Goldens post about a interview with Dr Byron Hyde which say,

Q: 7) How do you do a workup?
A: I’ll try to send to your group my working profile and you may even want to publish it. It will give you an idea of how extensive my exam is.


As Dr Hyde is stating that he is willing to make his working protocol available I will repost my post to Mark including that Dr Hyde can also be contacted and asked if he will provide information on the tests that should be done to rule out other disease, and wait and see if the observational skills of Mark and the Phoenix Rising team have improved.

All the best

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)


Dr Byron Hyde has stated in a 2012 lecture

“I’ll try to send to your group my working profile and you may even want to publish it. It will give you an idea of how extensive my exam is.”

This shows that he is willing to provide information on the testing that he uses to tests for other diseases in patients diagnosed with CFS.

So Dr Hyde should also be contacted by Phoenix Rising and asked if he will supply this information

Dr Byron Hyde’s contact details are

Mail


Dr. Byron Hyde, Chairman

121 Iona Street

Ottawa Ontario

K1Y 3M1

Canada

Fax (613) 523-1958

E-mail

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


 
Dr Byron Hyde has stated in a 2012 lecture

“I’ll try to send to your group my working profile and you may even want to publish it. It will give you an idea of how extensive my exam is.”

This shows that he is willing to provide information on the testing that he uses to tests for other diseases in patients diagnosed with CFS.

So Dr Hyde should also be contacted by Phoenix Rising and asked if he will supply this information

Dr Byron Hyde’s contact details are

Mail


Dr. Byron Hyde, Chairman

121 Iona Street

Ottawa Ontario

K1Y 3M1

Canada

Fax (613) 523-1958

E-mail

This information can then also be put on the websites of 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 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 &
I too would reallly like if PR can contact Dr Brian Hyde and then do an article on things which should be ruled out on the website (with any other things which can be thought of) with a link in a prominant place. It would be very valuable. PR is probably more likely to be able to get this info from Dr Hyde then general members of the public if we contacted him .
 
I too would reallly like if PR can contact Dr Brian Hyde and then do an article on things which should be ruled out on the website (with any other things which can be thought of) with a link in a prominant place. It would be very valuable. PR is probably more likely to be able to get this info from Dr Hyde then general members of the public if we contacted him .
Things to rule out that are not based on published research - raise red flags with me. Especially if they are things that can only be tested for through private patient payment. I have seen firsthand - and second and third - how expensive this search for the 'holy grail' can prove to be. And what happens at the end of it all?

What happens if the 'expert' you choose decides after all the tests come back negative for x,y, and z that you have their own personal favourite definition of 'ME'? What treatment do they suggest you take? And how much will it cost? What is their 'magic medicine'?

The problem with listing all the possible exclusions is that they are infinite. The problem with interviewing such 'experts' about their opinions in this regard is that they will all disagree with one another and push their preferred methods.

The CONSENSUS criteria attempt to better provide a list of COMMON exclusions and things that a diagnosing physician should consider as possible explanations for the presenting symptoms.

Published research - again based on opinion and experience in this respect - does go one better than individual opinion alone in that it adds more credible ammunition to any attempt at adding to the list of 'things to watch out for' on the CDC and NICE protocols.

I would not be in favour in giving Dr Hyde any more publicity than has already been afforded to him on this thread - and elsewhere in this forum (please search for threads in more relevant areas (try this one for starters)) than others have already done.

No single doctor has the answer. And I am, through experience, very wary of those charging for their tests and remedies.

Clinical trial? Fine. Go for it. Anything else - sucks in my opinion. But it's a process I think we all have to endure to some extent or other. I just don't think Phoenix Rising should do any more than it already does on the forum to give publicity to these people in this context.

This thread was about the letter sent to DHSS and the resulting petition. Which if I am not mistaken has now reached just under 1500 signatures - so a long way still to go to reach their target.

Let's get back on topic. Yeah I know - I haven't helped in this respect - but there we go... :)

If folk really want to debate Dr Hyde and his methods - or anyone else - then there are more appropriate places to do so. Let me know if you do start a thread I will join in - and maybe Kina will move some of these appropriate comments to it? Only a thought...

Edit:

Just read Ryan's latest comment on his Blue Ribbon thread. He talks about the differences in ME and CFS but in the context of uniting behind what we have in common in order to achieve change that will benefit us all.

His comments - in full and the analogy he draws - was not lost on me; particularly in relation to the context of some parts of this particular thread and the previous one that caused concerns to be aired :)
 
There is nothing about the original Holmes 1988 CFS definition that is Psychiatric. The symptoms that patients had to have included.

“Physical Criteria

Physical criteria must be documented by a physician on at least two occasions, at least 1 month apart.

1. Low-grade fever - oral temperature between 37.6° C and 38.6° C, or rectal temperature between 37.8° C and 38.8° C.
This makes me wonder whether it was the same illness as what most of us have, as most of us tend to have low body temperature.
 
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

...

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

...


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.
I agree that Dr Mirza's exclusion criteria are good and very useful. What I'm not clear about is what diagnosis (and treatment?) he uses for the 10% of patients for whom all his listed tests are negative. Does he use 'ME' or 'brain injury'?
 
I think this thread has remained bang on topic . It has been helping me understand whether or not to sign the petition ! The issues raised are inextricably intertwined.

I cant see how splitting the thread can be achieved without losing integrity.
---------------++------+---+-------------------------------------------

Those private UK doctors using CFS or ME /CFS or ME or CF - n ow I have also come to understand what they have been playing at too.


They too are not ruling out disease -

imaging taking your car to a mechanic . They make up a syndrome, lets call it Car Fatigue Syndrome (CFS ) :)

They dont test the engine , they dont test the electrics and if they do they dont use the updated tests so they come back as Normal.
They look at each test as individual and dont combine the tests to give a full picture .

They then declare the Car Fatigue Syndrome and say to drive it slowly. They send it for some

Car Behavioural Therapy.

So what difference is it going to make if the garage followed the same rubbish diagnostics - but declared ME instead .
 
The CCC says that ME and CFS are the same disease which helps no one. It requires a waiting list of six months before a patient can be diagnosed which is madness.
If it requires at least 18 months of testing according to Byron Hyde to rule everything else out, therefore a six month waiting period doesn't seem like 'madness' at all. It's not like a doctor can't start any testing if he suspects ME until six months are up. I don't think it's sensible to diagnose any disease or condition until you have at least done some testing and ruled out other things.

Getting back to what this thread is actually about -- the petition. If one wants to make a simple political statement that the CDC needs to properly name ME/CFS as just ME and to use a better criteria than they are using now, then by all means sign it. Or one can get bogged down in the forever arguing about this and that which leads to nothing but a back and forth argument that goes nowhere.
 
Ric said:

It really does make you wonder then why all the 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 either they have a very low IQ, or that the hundreds of millions of dollars that they are receiving from research grants etc and the patients, is in some way affecting their ability to think.
I countered by:

I have no problem with you or anyone showing different point of views. I feel that it is useful and informative especially when it is backed up by science, but the above statement is slanderous and false.

To state that experts/people who don't share your view have a low IQ is undignified.

To state that "they" receive hundreds of millions of dollars from research grants is a gross misrepresentation.

You make it sound like this field is full of charlatans who are out to make it rich on all the grants that are being thrown around. The reason why we are fighting so hard for awareness and advocacy is because of the opposite. No one wants to give us any funding, including the US government.
Ric said:

Up to the year 2000 the CDC and NIH had spent a combined total of 102.3 million on CFS research as stated in June 2000 GAO Report to the Honourable Harry Reid US Senate.

http://books.google.co.nz/books?id=_oeytNhkHBQC&pg=PP1&lpg=PP1&dq=June+2000+GAO+Report+to+the+Honourable+Harry+Reid+US+Senate.&source=bl&ots=fvb2_yWwIX&sig=aEJi6dhZBH57dOMuIdnm2-FmPOk&hl=en&sa=X&ei=Ymy_UamWLevQiAeejoCoBA&ved=0CC8Q6AEwAQ

A similar level of funding is still going on today, and much more funding is now coming from other sources such as 10 million from the Hutchins foundation for the Chronic Fatigue Initiative project.

It would be appreciated if you got your facts right before accusing me of “a gross misrepresentation”

I am entitled to, and legally allowed to express an opinion, that if researchers have spent so much money over so many years and have yet to come up with anything substantial to resolve the suffering of the patients, that the people involved may not in my opinion have the sufficient mental power required for the job, for your information it is called freedom of speech.

So when you state

but the above statement is slanderous and false.​




It is you that are false and are slandering me, because you have not spent the time to find out the true facts about how much money has been spent on CFS research since the mid 1980s.

I kindly ask you to remove these allegations from your post

Thank you
ric

Please see the following link here explaining the history of funding for ME/CFS. It is certainly not in the hundreds of millions of dollars as you stated. Furthermore, you state that funding is continuing on the same level since 2000 when it has been steadily declining.

Stating that experts in the field have a low IQ is not an opinion. It is stating a false fact. And I am asking you to retract that fact. I have utmost respect for many of these experts and I will not let you defame them in that way. It is a matter of opinion if you don't agree with them but do not make false judgements about them.

For example, my doctor, Dr. Derek Enlander, is a genius. He graduated medical school at age 17. He has started
the ME/CFS clinic at Mt. Sinai where with a one million dollar grant from a patient, they started an comprehensive study of the disease. He wrote the prologue to Dr. Ramsey's reprinted edition of his book. I have the utmost respect for him and when you make a blanket deragetory statement like the above, I take offense.
 
Golden. Nobody can categorically say what 'ME' or 'CFS' is or isn't. We are not there yet. We may never be. Science might determine that YOU or I don't fit or that 'ME' is the wrong name with the wrong definition for anybody in this group. For whatever reasons 'CFS' was termed as the 'catch-all' phrase it is generally acknowledged to be, that discussion is also largely irrelevant to this thread.

There is a chance that if you happen to see the 'right' expert you might get a cast-iron diagnosis and more importantly specific treatment; but again and even with all the tests in the world it's a lottery I would argue. And a potentially very expensive one.

BOTH labels describe very similar clusters of symptoms with various experts agreeing and disagreeing over which one or two or three symptoms correspond to which one two or three mechanisms that define or contribute to THE disease.

There are so many threads on this topic on this forum and we simply go round and round in circles. If the petition is adopted things might be clearer but they won't be perfect until the science catches up - in order to do that - the thinking goes that 'better' criteria would allow a better recruitment of participants in trials.

You know this. Some feel changing the name would mean a better experience for patients generally - some don't or are more reserved in adopting such a position.

Same thing with choosing one criteria over another. If anything look at the criteria - the ICC and the CCC compare them to the CDC and choose your horse. Simple.

Debating the merits of which expert is worthy of support is irrelevant here. This 'discussion' with all the reams of information stemming from Dr Hyde and his opinions - can be found elsewhere on the site or from any of the links already posted.

I'm not sure if you are new to all this discussion or not. Maybe I am being unduly harsh. If so I apologise in advance. If there is any part of the petition or the original letter to the DHSS that you don't understand we'll try and help.

It might be important to note that signing the petition outside of the USA will probably not count. I mean people can sign it but I doubt if it will be as effective if you sign and live in say the UK for example.

Kina or Mark might like to check on that for me :)
 
Hi Nielk, I have changed my original post, as it has seemed in some way to have lead you to think I’m referring to certain individual doctors, it now reads

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.

I would like to point out that I was referring to the total amount of money that has been spent worldwide on CFS research since the mid 1980s, this includes he vast amount of money spent on CFS research in the UK, and elsewhere, not just the large amount of money that has been spent in the US.

I think everybody else has understood what I meant, that large amounts of money have been spent and very little has been achieved, which I think has lead to many people to wonder if all of this money has been spent in the right way, and given to people with the right skills for the job.

My post was in response to Goldens ability to quickly get a good understanding of what is going on, and I was saying it makes you wonder why so many of the others involved in this field, have decided to spend the money in the way that they have. It was meant with a sense of humor!

I’m certainly have not been referring to any individuals or specific organizations.

I do hope that you can know see where I am coming from. As my intention was certainly not to cause you stress, or to defame any of the individuals that you have formed the opinion that I was. It was meant in a light hearted joking way!

All the best
 
Firestorm

Yeah i had never heard of the nightingdale criteria or hyde before . I guess that is because its not easy to find . I must try to look at the hyde threads onPR . i actually gave my G.P. a copy of the .CCC and then when I read corts article on how it could leave us all open to more psychiactric diagnoses I thought - great , thats just great :(

I cant see you being 'unduly harsh ' though either ... I think a lo is lost on me ....

place a whole cluster of exclamation marks (!!!!!!!) and i just see a cluster of exclamation marks :)

I believe Dr.Hyde can diagnose and test for ME within weeks of illness . If its not ME , he will find out what it is .

I want this for people . I am just learning as I go and giving what I can now. Its just the blocks at every turn and the so called Help is doing Harm...
 
Hi Nielk, I have changed my original post, as it has seemed in some way to have lead you to think I’m referring to certain individual doctors, it now reads

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.

I would like to point out that I was referring to the total amount of money that has been spent worldwide on CFS research since the mid 1980s, this includes he vast amount of money spent on CFS research in the UK, and elsewhere, not just the large amount of money that has been spent in the US.

I think everybody else has understood what I meant, that large amounts of money have been spent and very little has been achieved, which I think has lead to many people to wonder if all of this money has been spent in the right way, and given to people with the right skills for the job.

My post was in response to Goldens ability to quickly get a good understanding of what is going on, and I was saying it makes you wonder why so many of the others involved in this field, have decided to spend the money in the way that they have. It was meant with a sense of humor!

I’m certainly have not been referring to any individuals or specific organizations.

I do hope that you can know see where I am coming from. As my intention was certainly not to cause you stress, or to defame any of the individuals that you have formed the opinion that I was. It was meant in a light hearted joking way!

All the best

Hi Ric,

I appreciate you revising your post. I am sure that you did not seek to stress me out and I know sometimes I am too serious but, then again this is a serious disease with very serious problems. Although we might disagree in our approaches I am sure that I can state that what we are both striving for is for all CFS and/or ME patients to get well.

All the best,
Nielk
 
Hi Firestormm, RE

Things to rule out that are not based on published research - raise red flags with me.
All the other diseases that can cause the symptoms of CFS are backed up by a ton of published research, it is scientific fact that these diseases do cause these symptoms and should be tested for in patients with these symptoms. There are not an infinite number of diseases that can cause these kinds of symptoms, there is over a hundred, but many of them are picked up with the same tests.

The cost of getting most people correctly diagnosed will be very small. The testing that Dr Mirza recommends to find about 90% of the misdiagnosed is very cheap, it is a small number of additional blood tests and an OGTT tests, this will cost a few hundred dollars.

Even if we can just achieve getting these tests added to the CDC and NICE recommendations, it will stop a very large number of people suffering for years needlessly, or dying, and greatly reduce the number of people who have other known diseases being included in research.

This is a request that is logical, and if anyone argues against it, then it will be obvious to all that they don’t care about stopping people suffering. This can then be taken to the press, and used in internet campaigns to shame them into action.

If we can make a complete testing list available, on all the US CFS advocates websites, then this can be used by people to ask for addition tests to be done, or they could pay to get it done privately.

If we advocate that the complete list of tests is done before anyone is allowed to be used in research, this will make it very easy then to get people, who all have diseases of unknown cause to be researched. Again this is a logical and good science request, anyone who objects to it, will in affect be putting themselves in the position of saying that they don’t want to practice the sound scientific principle of making sure that the people being researched don’t have other known diseases.

People may have their own opinions about Dr Hyde and Mirza, but this is not the point, at the moment we have the recommendations from the CDC and NICE and the other definitions, but all of them including the CCC and ICC are not good and do not even recommend to test for some of the very common diseases that cause these kinds of symptoms.

If we can get the information from Dr Mirza and Dr Hyde, and I’m totally open to testing lists from other expert diagnosticians being included if anyone knows of any. Then we have put the information on the table, for it to be taken off the table, then those that want it taken of the table have to prove it wrong, but they can’t because things that Dr Hyde tests for like Syphilis and TB, do cause these kinds of symptoms and it is in the medical text books. So anyone who says that they don’t want these kinds of conditions to be tested for, are then stating that they don’t want to practice good medicine, which is not a position they are going to want to put themselves in.

People might raise concerns about the cost of testing; as I have stated earlier this doesn’t make sense when compared to the money lost from having people left sick for years.

The question people have to ask themselves is how much are their lives worth? The maximum that it will cost to be tested correctly for someone with a hard to diagnose condition is around $10,000 dollars. Is a human life not worth spending $10,000 on? I think it is.

You said

This thread was about the letter sent to DHSS and the resulting petition. Which if I am not mistaken has now reached just under 1500 signatures - so a long way still to go to reach their target.

Let's get back on topic. Yeah I know - I haven't helped in this respect - but there we go...
Talking about getting additional testing for people is extremely relevant to this thread! The instructions in the CCC on how to rule out other disease are very deficient, they don’t even have the most common cause of these kinds of symptoms on the planet Vitamin D deficiency in it. For this reason alone nobody should want the CCC, because it gives instructions in it, which will if followed, cause doctors to wrongly misdiagnose people with ME/CFS and destroy their lives.

All the best
 


Hi MeSci, RE

I
agree that Dr Mirza's exclusion criteria are good and very useful. What I'm not clear about is what diagnosis (and treatment?) he uses for the 10% of patients for whom all his listed tests are negative. Does he use 'ME' or 'brain injury'?
I don’t know which is one of the reasons he should be contacted. I would imagine that as ME has not been part of the US medical vocabulary for so long, he would probably use brain injury.

We need the input of people who are very highly qualified in diagnostics, Dr Mirza is an Assistant professor of internal medicine, he knows his stuff, and obviously feels very strongly about people being wrongly diagnosed with CFS.

So he would be a great asset.

He is on our side, so we should be asking for his assistance

All the best