"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/

Support Phoenix Rising​

Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

There are many ways you can help Phoenix Rising to continue its work. If you're able to offer your time, we could really use some more writers, proof-readers, fundraisers, technicians...and we'd love to expand the board of directors. You can even donate significant sums, at no cost to yourself, as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

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In your opinion, Ric, how would someone qualify for the diagnosis of ME in the US?

 

Hi Snowathlete,

I have repeatedly asked Phoenix Rising to put up warnings that people may be misdiagnosed and/or provide people with information on common illnesses that cause CFS like symptoms for years, and have not received replies, and no action has been taken by Phoenix Rising to remedy this extremely important life and death issue. Therefore, I am Not very impressed.

Because this has never been done, because I care about people and want to help in any way I can to try and relieve peoples suffering, I have replied literally to hundreds of peoples posts and explain what are the common illnesses that may be causing their suffering that they need to get ruled out, I have been saying the same thing over and over to new people who arrive on the forum, which has and does have a detrimental effect on my health.

I do struggle to believe that the Phoenix Rising team is so busy that they can’t do once what a very sick person has managed to do hundreds of times.

But if they are, I will make it incredible easy for them and provide the information for them in a way that if they only between them all, can manage to find one hour of their time they can make a large step towards helping people, if more information is acquired from the likes of Dr Mirza it can then be added.



All that needs to be done is this





In every section of this forum start a new tread and sticky it.

Name the tread WARNING MISDIAGNOSIS

In these treads copy and paste this information.





Warning to all visitors to Phoenix Rising research has shown that many people who have been diagnosed with CFS, have been misdiagnosed with it and have other known medical conditions that are often treatable.

This research can be found at

http://www.rcpe.ac.uk/journal/issue/journal_40_4/newton.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3269106/

Serious concerns about the failure to include certain conditions, and use up to date reference ranges, in the testing to rule out other diseases recommended by the CDC and NICE, before someone is diagnosed with CFS, have been expressed by Dr Shirwan A Mirza, Assistant Professor of Internal Medicine at Auburn Community Hospital, New York,

Dr Mirza recommends additional testing in these articles.

Shirwan A. Mirza, MD, FACP, FACE

The myth of Chronic Fatgue Syndrome. 9 June 2007 http://www.bmj.com/rapid-response/2011/11/01/myth-chronic-fatgue-syndrome

It pains me to see the concept of Chronic Fatigue Syndrome (CFS) promoted by individuals and organizations alike, including a prestigious US Government Agency such as CDC (Center for Disease Control). I do not recall using CFS as a diagnosis. The reason is simple, I go beyond the CDC criteria in investigating chronic fatigue. In their 10-minute consultation "Tiredness", Drs Moncrieff and Fletcher jump to a speedy conclusion that the patient under discussion has depression. That is exactly what patients dislike about our diagnostic acumen, attributing major symptoms in their life to mental diseases without first exhausting all the underlying physical ailments.

I have yet to see a diagnostic criteria list for fatigue that is complete. This unfortunately includes the diagnostic criteria for Chronic Fatigue Syndrome issued by CDC. No wonder we keep citing CFS as a cause for fatigue when we ourselves fail to pinpoint the diagnosis. In my endocrine practice after ruling out the obvious causes of fatigue (mentioned in this 10-minute consultation, I will also add adrenal insufficiency which is an autoimmune disease not mentioned by name in the mini consultation), I will do the following tests and I almost always find the cause for fatigue: 1. True biological reference range of TSH should be 0.3-2.5. If TSH is > 2.5, especially when Thyroid Peroxidase titer is > 10, the patient might have evolving hypothyroidism. If you go by your laboratory's reference range of 0.5-5, of course you will miss the boat, and resort to the waste basket diagnosis of CFS.

2. Check glucose tolerance test on people who are obese, have family history of diabetes, and have nocturia, or polyuria. The fasting plasma glucose should be <100 mg/dl (5.5 mmol/l).Postprandial plasma glucose should be <140 mg/dl (7.7 mmol/l)at 30-minute, 60-minute, 90-minute, and 120-minute. If you do not use these diagnostic thresholds, you will miss the diagnosis of diabetes, or impaired fasting glucose, or impaired glucose tolerance. The latter 2 are also called pre-diabetes. Pre-diabetes and diabetes both can cause severe fatigue if remained undiagnosed. The mechanism is through loss of glucose (body's fuel) in the urine (Glycosuria>

Check vitamin B12 level. The cutoff reference range is >300 pg/mL (>221 pmol/L), or even higher. Most laboratories in the US have the reference range at 160 or 180, erroneously low. If in doubt, check homocysteine level, the reference range of homocysteine should be between 5 and 15 µmol/L (some authorities use 10 as cutoff). If you rely on outdated reference range, you miss the boat and fall in the trap of CFS.

3. In the Northern regions of the United States and Europe, vitamin D deficiency is rampant. In some cities in the United States 70% of the population in the winter might have vitamin D deficiency (such as Boston). Vitamin D deficiency is responsible for calcium and phosphorus absorption (among other host of other functions). Lack of phosphorus means lack of ATP in the body, which means that you feel tired. I have helped thousands of victims of this type of chronic fatigue through vigorous vitamin D supplementation. Not to mention that vitamin D deficiency causes also severe myalgia and bone pains (osteomalacia), often missed since vitamin D deficiency is not on the list of differential diagnosis of fatigue, including (tragically) the CDC list. Failure to recognize vitamin D deficiency leads you to misdiagnosing patients as CFS and/ or fibromyalgia. Nearly 70% of patients with fibromyalgia have vitamin D deficiency, i.e. misdiagnosed. The true reference range of 25 hydroxy vitamin D is 32-100 ng/ml.

4. Sleep deprivation is a very common cause of fatigue. This was mentioned in the 10-minute consult.

5. Celiac disease is relatively common (~1% of Caucasians have it, most of them undiagnosed). If you don't think of Celiac, you will be an easy victim in the trap of CFS. Celiac can cause pan-malabsorption of iron, vitamin D, B12 (mentioned above) in addition to other nutrients and minerals.

6. If iron saturation is high, perform genetic testing for hemochromatosis. This is another relatively common genetic disease in the Caucasians.

Any list that does not address the above diagnoses (with the reference ranges that I mentioned), would lead to missing the root causes of fatigue. CFS is not a diagnosis; it is merely re-labeling fatigue with a fancier name. It is the time that CDC revisited the criteria of CFS, and included the causes I cited above. I can say with confidence, backed up with data of hundreds, or even thousands of patients with fatigue who I have helped over years, that patients with chronic fatigue syndrome are patients who have not been adequately worked up in accordance with the criteria mentioned above. It is for this reason that CFS is not in my medical vocabulary.

Competing interests: None declared



Shirwan A. Mirza, MD, FACP, FACE,

Chronic Fatigue Syndrome: NICE and CDC miss the boat. 31 August 2007 http://www.bmj.com/rapid-response/2011/11/01/chronic-fatigue-syndrome-nice-and-cdc-miss-boat

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

Competing interests: None declared

A more detailed account of the diseases that Dr Mirza recommends should be tested for, with links to medical information that provides more information on testing required etc has been provided by a forum member in post #461here http://forums.phoenixrising.me/index.php?threads/is-it-worth-explaining-the-difference-between-me-and-cfs-to-the-public.9591/page-24

Chronic fatigue syndrome is defined as having a certain set of symptoms. The CDCs symptoms list can be found here http://www.cdc.gov/cfs/toolkit/ the NICE symptom list can be found here http://publications.nice.org.uk/chronic-fatigue-syndromemyalgic-encephalomyelitis-or-encephalopathy-cg53/guidance#presentation Any body who has additional symptoms that are not found on these lists, should be investigated by a doctor to find the cause of these symptoms.

Chronic fatigue syndrome is defined as a disease that does not cause patients to fail standard Laboratory tests, Patients with failed standard laboratory tests should be investigated by a doctor to find the cause of these failed test results.

The diseases that Dr Mirza states should be tested for are only some of the more common diseases that can cause the symptoms of CFS. Additional testing may be required to diagnose other conditions that cause the same symptoms as CFS.

There is diagnostic software available to doctors, to help them correctly diagnose patients. If you have a helpful doctor, you can ask them is they will use Isabel diagnostic software to help find the correct diagnosis, Doctors can use this for free, as it has a ten day free trial, information on it can be found here http://www.isabelhealthcare.com/home/free_trial

Diagnosis Pro, Diagnostic software is free to use by anyone, there is debate however if it is as good as Isabel diagnostic software. It will however provide lists of the possible causes of failed test results and symptoms. It is available here http://en.diagnosispro.com/ Instructions on how to use it can be found here http://en.diagnosispro.com/diagnosispro_help/generate_a_differential_diagnosis_list/

If it does come up with alternative diagnoses for people, they can then take the information to their doctors and ask them to investigate it.

Information on what failed blood tests may mean as well as being provided on the Diagnosis Pro site, is also available on the Lab tests online site http://labtestsonline.org/

It is advisable for patients to get copies of all tests that have been done on them, as they may be able to see something that has been overlooked, and then question their doctor about it.

The Right Diagnosis site also provides help for making a correct diagnosis. It has Assessment questionnaires that will help people to find the correct diagnosis for a large number of symptoms, here http://www.rightdiagnosis.com/checklist.htm And a Symptom Checker that allows multiple symptoms to be combined and will tell people the likely causes of these symptoms http://symptoms.rightdiagnosis.com/

Information on any disease that patients may wish to look up is available online at reputable medical sites, such as Emedicine. http://emedicine.medscape.com/

However do not self diagnose, always check information with a medical professional.

This Right Diagnosis site also contains large amount of information to help patients with their interactions with Doctors, such as

Steps to take to get the most out of a doctor visit http://www.rightdiagnosis.com/diagnosis/steps-doctors-visit.htm

What to tell your doctor about your symptoms http://www.rightdiagnosis.com/diagnosis/tell-symptoms-doctor.htm

What questions will the doctor ask about your symptoms (and why)?http://www.rightdiagnosis.com/diagnosis/questions-doctor-ask.htm

What does your doctor do in a physical examination? http://www.rightdiagnosis.com/diagnosis/doctor-physical-examination.htm

What questions should you ask the doctor about a symptom or diagnosis? http://www.rightdiagnosis.com/diagnosis/questions-ask-diagnosis.htm

What questions to ask the doctor about the treatment http://www.rightdiagnosis.com/diagnosis/questions-ask-treatment.htm



Information on prescription medicines and possible side effects can be found here http://www.drugs.com/

If patients are on multiple medications, they can easily check for harmful interaction that doctors may have overlooked by using the drugs.com interaction checker found here http://www.drugs.com/drug_interactions.html

Many alternative medicines can have very serious side effects and interactions. Information on what the potential complications for almost all Herbs and Supplements can be found on this page http://www.nlm.nih.gov/medlineplus/druginfo/herb_All.html

 

Hi Gabby,

In your opinion, Ric, how would someone qualify for the diagnosis of ME in the US?

My personal opinion of, “how would someone qualify for the diagnosis of ME in the US?”
Is that both the US ICD codes and the WHO ICD codes state that ME is a Neurological illness. So therefore the logical thing to do would be to refer patients to a Neurologist, who can then tests these patients and use Neurological scans such as QEEG, MRI and SPECT to see if the patients do indeed have a Neurological illness, once they have ruled out all the other neurological illness that could be responsible for the damage found in the patients, they can then be diagnosed with ME. After all if ME is a Neurological illness then a intensive Neurological examination has to find Neurological damage.

To my mind, the issue is how can ME be in the US ICD codes, and yet the CDC and DHHS have not provided a definition for it, so the medical community doesn’t even know how to diagnose it. The CDC says that ME “has a case definition distinct from that of CFS.”

So why is nobody allowed to see it???????? I think these issues could be used very successfully by a lawyer to get ME patients the help that they have needed for so long.

All the best

 

rlc

Hi Snowathlete,

I have repeatedly asked Phoenix Rising to put up warnings that people may be misdiagnosed and/or provide people with information on common illnesses that cause CFS like symptoms for years, and have not received replies, and no action has been taken by Phoenix Rising to remedy this extremely important life and death issue. Therefore, I am Not very impressed.

Members are quite intelligent, I don't think they need a warning re: misdiagnosis.

The forum is for sharing information related to whatever individual members decide they would like to discuss.

We know we need to add more information and resources but there are only a few staff and it's going to take time. We also have plans to add more forums re; alternative diagnoses. Since most members, including yourself, don't step up to volunteer to help add this information, it's going to take a long time. We understand why most members can't volunteer due to their health status so it's not an issue.

You have no concept of the amount of work it has taken with a skeleton staff to make all the changes thus far.

Don't make assumptions unless you are actually privy to the monumental amount of work the few staff here actually do.

Because this has never been done, because I care about people and want to help in any way I can to try and relieve peoples suffering, I have replied literally to hundreds of peoples posts and explain what are the common illnesses that may be causing their suffering that they need to get ruled out, I have been saying the same thing over and over to new people who arrive on the forum, which has and does have a detrimental effect on my health.

Why don't you just start a few threads with all the information in the most appropriate forum and ask us to sticky them?

I do struggle to believe that the Phoenix Rising team is so busy that they can’t do once what a very sick person has managed to do hundreds of times.

We are extremely busy. I am in the middle of reorganizing the forums, adding 13 new symptoms forums where I will have to move over 1450 threads one-by-one. I also answer all the general contact emails (have never received one from you), I moderate the forums, accept new members, keep the spammers out, recently added two new styles which took ages. I am very busy and Mark is 10X busier than I am. So we are extremely busy, we are all sick, and we do it for free so don't you even dare to suggest that we don't care about our members.

But if they are, I will make it incredible easy for them and provide the information for them in a way that if they only between them all, can manage to find one hour of their time they can make a large step towards helping people, if more information is acquired from the likes of Dr Mirza it can then be added.

That's not the point. We plan to have a complete and comprehensive resources section where we will be adding information related to many doctors, research, criteria, protocol etc. This is going to take a large amount of time. You are so focused on your own agenda, you don't seem to realize that there is masses of information to add related to all aspects ME/CFS. To just have your information would be doing the members a disservice because there is so much out there of relevance.

All that needs to be done is this



In every section of this forum start a new tread and sticky it.

Name the tread WARNING MISDIAGNOSIS

In these treads copy and paste this information.

Warning to all visitors to Phoenix Rising research has shown that many people who have been diagnosed with CFS, have been misdiagnosed with it and have other known medical conditions that are often treatable.

That's illogical and we don't have duplicate threads. Why have a thread in the advocacy forum labelled this or in the Community section or in the relationships forum. We are going to deal with this kind of thing in the future in a more logical and comprehensive manner. We don't run the forum based on one member's agenda -- we look at the big picture.

The Phoenix Rising forums are for the members to add information as they wish. We have one forum that is related to information added by Phoenix Rising -- Phoenix Rising articles. It's not up to us to define the information in all the other forums. It's up to members to direct the conversations as they wish.

If you wish us to add specific information to our resources section, post it in the "Information and Resources" forum.

If members want resources to be added in a more timely fashion, maybe members could indicate that to me via Conversation that they would like to assist. By the way, the post I just quoted was massively off-topic to this thread. It's about a petition and Unger's response -- it has nothing to do with what you want Phoenix Rising to do or our apparent failings according to you. My strong suggestion is to stop this off-topic posting on this thread. If you are serious about changes then get involved and stop making off-topic demands and rude comments about Phoenix Rising in the middle of thread. Thank you.

 

Perhaps this is off-topic, and perhaps it's none of my business, but I'll say it anyway.

rlc, like Kina says, this is very much a members' forum. We are never stopped from posting information on the forum, and never stopped from creating our own threads, and blogs etc. So, like Kina suggested, why don't you consider creating your own thread in an appropriate section, re misdiagnosis etc., and post all your important info in it? (You could retrieve info from past posts if helpful.) Then you can just link to your thread whenever you want to present the information to anyone. If you ask Kina, she might be able to give you unlimited editing rights for that specific thread, in which case you'll be able to treat it like a wiki, and edit/update it endlessly, as you need to.

May I suggest that you keep it succinct, or keep it well organised and lay it out in such a way that readers are not overwhelmed with information (e.g. use short introductions, short summaries, subheadings and subsections etc.) (Please don't take offence but I'm afraid that I find some of your long posts far too long to read, so I avoid them unless I'm directly engaging in discussion with you, but even then I struggle with them. I don't think you can expect many of us to read very long posts.)

Phoenix Rising staff are actually very nice people, in my experience, and they're receptive to ideas, so approach them if you want to discuss an idea with them. (But keep your messages short, because they are ill and busy.)

 

Hi Gabby,



My personal opinion of, “how would someone qualify for the diagnosis of ME in the US?”
Is that both the US ICD codes and the WHO ICD codes state that ME is a Neurological illness. So therefore the logical thing to do would be to refer patients to a Neurologist, who can then tests these patients and use Neurological scans such as QEEG, MRI and SPECT to see if the patients do indeed have a Neurological illness, once they have ruled out all the other neurological illness that could be responsible for the damage found in the patients, they can then be diagnosed with ME. After all if ME is a Neurological illness then a intensive Neurological examination has to find Neurological damage.

To my mind, the issue is how can ME be in the US ICD codes, and yet the CDC and DHHS have not provided a definition for it, so the medical community doesn’t even know how to diagnose it. The CDC says that ME “has a case definition distinct from that of CFS.”

So why is nobody allowed to see it???????? I think these issues could be used very successfully by a lawyer to get ME patients the help that they have needed for so long.

All the best

The CDC does use CFS and ME interchangeably. See this here on the CDC sight.

It is talking about the newest multi-site clinical assessment study. It states:

CDC has begun a multi-site clinical assessment of chronic fatigue syndrome (CFS) to characterize patients with CFS or myalgic encephalomyelitis (ME) in clinical practices of clinicians with expertise in CFS/ME.

Furthermore, if you are saying that ME is really just a neurological illness as per ICD-9 323.9, I will have to disagree with you. That is a diagnosis for Encephalitis whic is a pure neurological illness whereas ME as the ICC states has a multu-systemic pathology, involving the immune and endocrine system, including dysfunction of cellular energy metabolism.

 

"Various terms are incorrectly used interchangeably with CFS. CFS has an internationally accepted case definition that is used in research and clinical settings. [...] The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS."

This CDC quote from an online training course no longer exists on their website and the original URL is now redirected.

http://www.cdc.gov/cfs/cme/wb1032/chapter1/overview.html

A copy does however exist at web.archive.org:

First indexed 25th July 2008 -
http://web.archive.org/web/20080725234429/http://www.cdc.gov/cfs/cme/wb1032/chapter1/overview.html

Indexed again unchanged 14th March 2009 -
http://web.archive.org/web/20090314000505/http://www.cdc.gov/cfs/cme/wb1032/chapter1/overview.html

Indexed again 16th May 2011 but changed address to reflect a change in address on the CDC website -
http://web.archive.org/web/20110516095416/http://www.cdc.gov/cfs/cme/wb1032/chapter1/overview.html
http://web.archive.org/web/20110516095416/http://www.cdc.gov/cfs/education/wb1032/chapter1-1.html

Indexed again 22nd October 2012 but now with an error and redirected -
http://web.archive.org/web/20121022150954/http://www.cdc.gov/cfs/cme/wb1032/chapter1/overview.html
http://www.cdc.gov/cfs/education/index.html

There is a similar chain of events for another URL which had the same content:
http://www.cdc.gov/cfs/cme/wb3151/chapter1/overview.html.

Extracts of the original quotation does not appear in a search of the CDC website anymore either. Searching for "myalgic encephalomyelitis" just reveals documents on ICD or the multi-site study. Personally I think this was more of a casual aberration than an official hardline stance from the CDC. I remember watching this video mentioned below:

"More than a decade after the out break, Prime Time Live presented a television news story about Chronic Fatigue Syndrome. They conducted a telephone interview with William Reeves of the CDC, who told them that the patients in Lake Tahoe were actually suffering from hysteria. In the same news story, Stephen Strauss of the NIH said CFS is so subjective that patients will commonly feel better no matter what you give them. These are not the kind of beliefs that give one a sense of any seriousness or urgency in solving a problem, and I began to wonder if their ongoing research was anything more than just going through the motions."

http://www.hhs.gov/advcomcfs/meetings/presentations/bokelman_andrew_100312.pdf

I think this is the video:

I have not read Osler's Web but judging from other material I have read on the subject over the years it sounds like the authorities did not treat the Lake Tahoe outbreak seriously at all. CFS was loosely based on that incident yet somehow disconnected from it. What followed over the next 30 years was continued blundering which makes a mockery of the CDC's supposed mission statement ( http://www.cdc.gov/about/organization/mission.htm ).

FWIW, here is the full article which had the previous quote on ME and CFS being different:

Chronic Fatigue Syndrome > Continuing Education > Continuing Education Portal > Diagnosis and Management > Introduction, Course WB1032 > Chapter One > Overview of CFS

Chapter One, Course WB1032

Overview of CFS

Chronic fatigue syndrome (CFS) is a complex illness characterized by profound fatigue of at least six months’ duration that results in substantial reduction in occupational, personal, social or educational activities; the fatigue is not improved by rest, may be worsened by physical or mental activities, and is accompanied by characteristic symptoms (impaired memory or concentration, unrefreshing sleep, headaches, muscle pain, joint pain, sore throat and tender cervical/axillary nodes). CFS is marked by a dramatic difference in pre- and post-illness activity level and stamina.

Most people with CFS who consult health care professionals describe their illness as beginning suddenly over a period of hours or days. In contrast, most people with CFS who are identified in community studies describe a gradual onset of illness over weeks or months. The clinical course of CFS varies considerably among people with the condition and frequently has an intermittent pattern of relapse and remission. As yet, there are no diagnostic tests or laboratory markers for CFS, and its pathophysiology remains unknown. Selected research findings will be discussed in this course.

Illnesses similar to CFS have been documented for several centuries, some possibly linked to bacterial, viral or protozoal infections such as brucellosis, yellow fever, hepatitis, influenza and malaria.

CFS was first formally defined in 1988 (Holmes et al.) following studies by CDC in Incline Village, Nevada. However, similar illnesses have been described for many years and known by many names. Current interest in CFS began in the early 1980s when several groups around the U.S. identified patients with chronic fatiguing illnesses thought to be prolonged infectious mononucleosis based on the clinical presentation and laboratory evidence of what was then considered an active Epstein Barr virus (EBV) infection. Subsequent studies of these cases, including one in Incline Village, Nevada, did not support a role for an active response to EBV. When the illness was first defined in 1988 the name chronic fatigue syndrome was selected because a more specific name implying known pathophysiology would have been misleading and because the most common and prominent symptom was found to be chronic fatigue (Holmes et al.).

Various terms are incorrectly used interchangeably with CFS. CFS has an internationally accepted case definition that is used in research and clinical settings. The name chronic fatigue and immune dysfunction syndrome (CFIDS) was introduced soon after CFS was defined; there is no case definition for CFIDS, and the name implies an understanding about the pathophysiology of CFS that is not fully supported in the medical literature. The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.

Page last modified: December 26, 2007

Content Source: National Center for Zoonotic, Vector-Borne, and Enteric Diseases (ZVED)

 

This short course exists on the CDC website:

http://www.cdc.gov/cfs/education/diagnosis/course.html

eg ...

Chapter 1: Overview and Definition of CFSPage: 1 of 9

Introduction and Background

In the early- to- mid-1980s CDC received many inquiries regarding a chronic illness characterized by a consistent, but unexplained constellation of symptoms that included marked fatigue and activity intolerance, pain, disordered sleep, neurocognitive problems, and infection-related symptoms/signs, such as sore throat, tender lymph nodes, and possible low grade fever. It had been questioned whether such an illness was associated with an ongoing infection with the Epstein-Barr virus (EBV) [1]. A CDC investigation of a possible outbreak of that illness did not identify a specific infection [2]. Those results and the previous inquiries led the CDC to convene a working group in 1987 to formulate a working case definition that would be applicable for case identification and subsequent research studies [3]. The working group chose to name the illness "chronic fatigue syndrome".

 

ric ,

I much appreciate the information in your posts and I have considered the impact on you. Thank you for the extended information .

I have just never been able to piece it altogether before.

@thread

I NEED a warning misdiagnoses CFS. And I would have wanted to know my initial ME diagnoses was sloppy . The trauma I endured getting my vit D3checked - I have NEVER been given coeliac /lyme test by NHS , my tsh was approaching 7 and this was another TRAUMA trying to get a FULL PANEL thyroid done - which they would not do ... I was denied a TB test even though another doctor told my family we all have to have one .


My POTS /OI i learned about on PR whereas it should be at my Doctors ...

I have no NHS doctors I can go to (in the UK many say the neurologists are as bad as ever on ME )...

My local ME group is a mixed bag of mis -diagnosed CFS -

And the rest are going for Car Behavioural Therapy to try to cure their Car Fatigue Syndrome because the Mechanics are in a fog of oblivion as to how to test for M.E. and I think many are incompetent and using CBT as a GET out clause ...

Yes , ignore those warning lights - false illness beliefs , hypervigilant is all to even notice your break light is on.

Getting the diagnoses right has to underpin any forum surely?

Imagine a Cancer forum which had people with diabetes , altzeimers, flu , rare rheumatoid arthiritis , all on stating they were calling it all Cancer ....

And the forum thought that was a good idea ....

That could be the new name for ME/CFS in fact ...... Cancer . I may as well start telling people I have Cancer .


Even the private CFS doctors that I have PAID to guide me out of this diagnostic sewer have not even done these basic checks ...


Its no good either me just going to my G.P. This isnt going to solve a thing.


When my Mother was diagnosed with terminal bladder cancer (because they had been busy playing bingo with her each time she visited the G.P. surgery and the diagnoses was late - eg. patient walks in.... Doctor shouts ... Cystitis ... and pats self on back ...

Game two .... doctor shouts 'tilted womb ' and pats self on back ...
Game three ... Doctor shouts 'not tilted womb ' and pats self on back ...
Game four ... infection... patient stubborn...stubborn infection ...more anti biotics .....pats self on back ...

And you see these numbers were called in the most unscientific way possible until my Mums number was up ... and the Doctor shouts Bingo!!! Terminal Bladder Cancer .


And the whole traumatic 6x months that followed were medical mess after mess .

One such incident involved my mother needing a stent as chemo damaged her kidney .

Whilst she was waiting we had nurses come round daily .

Mum gradually stopped eating and was vomiting...

Diagnoses -' that will be the Cancer '

Here is some Anti -sick medication .

She stopped being able to eat all together and then couldn't swallow water ver well .

We will book you in with a Macmillan Nurse for a re assuring chat came the answer .

I was beside myself with worry and had an awful foreboding feeling .

I said - SHE CANT EAT - SHE CANT DRINK without being sick ...she is diabetic ...

What about her electrolyte balance - nourishment and so on.

I was given the brush off and told to wait days for Macmillan Nurse.

It was approaching 2 weeks of this now .

In a moment of something I had the insane idea of walking into the VETS I was passing .

I apologised profusely and we talked in the hypothetical to protect the VET from any comebacks ...

She was a GODSEND . She listened to my anxiousness over my Mother .

She said: If my Mum was an ANIMAL and my patient ....

FIRST and IMMEDIATELY I would do blood tests....

Of course . I was stupid not to have thought of this myself .

I immediately got in touch with the Sister and I told her I had spoken to a VET !
who recommended blood tests .

They were done next day .

That evening an ambulance was rushed round to take my Mum to A&E as her Creatanine levels were above 1300.

She nearly died . She had emergency stents but was told her kidneys both had been badly damaged.
Due to the incident .


So , Why am I mentioning this ???? To try to illustrate :

1)There is poor diagnostics occurring which is commonplace not occasional

2) That I need help to guide myself to the right diagnoses for ME

3)This needs to include templates to get myself heard effectively

4) I need advocate help to do this

5) Confusing medical definitions of ME and CFS is not helping.

 

Hi golden, thank you very much for your appreciation of my hard work, it would be nice if similar appreciation was extended from the people who claim to be too busy to do this.

You and anyone else who wants to, have my full permission to copy and repost the information I have provided anywhere you like, be it on this forum or others. As many people do need this information urgently.

I and no doubt many others understand all the points that you are making here

So , Why am I mentioning this ???? To try to illustrate :

1)There is poor diagnostics occurring which is commonplace not occasional

2) That I need help to guide myself to the right diagnoses for ME

3)This needs to include templates to get myself heard effectively

4) I need advocate help to do this

5) Confusing medical definitions of ME and CFS is not helping.

Before I am yet again accused of going off topic.

This tread is about Dr Ungers reply to the letter sent to

To: Secretary Sebelius, Dr. Howard Koh, Dr. Thomas Frieden, and Dr. Francis Collins

CC: Dr. Janet Woodcock, Dr. Beth Unger, Dr. Susan Maier, Dr. Nancy Lee, CFSAC members

This letter states that what is wanted by these US CFS advocacy groups is

1. Adopt a disease appropriate case definition: ME, as defined by the Canadian Consensus Criteria (CCC), must be recognized by DHHS and the United States government for the serious and debilitating disease that it is. ME is not a subtype of “CFS”. The CCC must be adopted now as the baseline case definition for this disease. It can be evolved as additional knowledge is gained, the definition is operationalized and markers are validated. We do not need more years of study to fix what is so clearly broken today.



The CCC does not have a complete list of tests that should be done to rule out other diseases that cause the kinds of symptoms named in it. It doesn’t even have testing for the most common cause of these kinds of symptoms Vitamin D deficiency in it.

Therefore as this letter from the US CFS advocacy groups, is requesting that doctors should use the CCC, which doesn’t have adequate testing in it. This will potentially lead to more people being misdiagnosed.

Therefore by asking that information be placed on this site, to help people to avoid being misdiagnosed, which includes Doctor Mirza’s information on flaws in the CDC and NICE testing requirements, many of these flaws are also in the CCC, what I m trying to do is to stop the damage that will be done if the CCC is accepted for use on the US population because of the letter that the US advocacy groups have sent.

And pointing out that the CCC should not be used because it has a testing list which will not detect many diseases that can cause the kind of symptoms found in the CCC. Therefore from a medical perspective it is not wise to adopt the CCC. So therefore in my opinion people should not sign the petition.

This is my opinion as to why what I have said is on topic, certain people may not agree, but my opinions should be respected.

As this tread is getting rather long, I will give a synopsis of why in my opinion it is not in the best interests of ME patients to sign this petition.

The letter from the US advocacy groups states that the subject is



“Need for Focused Attention on Myalgic Encephalomyelitis (ME)”



However the letter calls for the Canadian Consensus Criteria (CCC) to be adopted.

The CCC is not a ME definition, it states that ME and CFS are the same illness! The principle authors of the CCC, wrote the ICC, they are now saying that the ICC is a definition for ME and the CCC is not.

Therefore this letter from the US CFS advocacy groups is not wanting “focused attention on ME”,

It is wanting CFS and ME to be called ME, which will continue the problem of all the ME patients being muddled in with CFS and the misdiagnosed, all that will be achieved is that the label on this group of patients with many different illnesses will be changed from CFS to ME. Which will not resolve the problem of mixed cohorts in research. It will not help to properly diagnose the patients with many different illnesses that are muddled together, and will not help get access to the treatments that they need for their different conditions, and it will also get rid of the advantage that ME patients have in the US ICD codes, were ME is a recognized disease, which is not CFS.

This letter states that

“There is an urgent need to stop perpetuating this confusion and start researching and treating the disease that these patients actually have – myalgic encephalomyelitis.”

This is true, therefore in my opinion nobody should sign a partition that calls for the CCC to be adopted which states that CFS and ME are the same disease, as this will perpetuate this confusion!

Article 1, of this letter

1. Adopt a disease appropriate case definition: ME, as defined by the Canadian Consensus Criteria (CCC), must be recognized by DHHS and the United States government for the serious and debilitating disease that it is. ME is not a subtype of “CFS”. The CCC must be adopted now as the baseline case definition for this disease. It can be evolved as additional knowledge is gained, the definition is operationalized and markers are validated. We do not need more years of study to fix what is so clearly broken today.



Is not true, the CCC does not define ME, it states that ME and CFS are the same illness.

Do the writers of this letter not realize that Kathleen Sebelius is a politician, who because see does not have medical training, will consult with medical experts? Who will tell her that the CCC says that ME and CFS are the same disease, and calls it ME/CFS.

Article 2.

1. Stop using “CFS”: The terms "Chronic Fatigue Syndrome" and "CFS" must be permanently abandoned along with the overly broad, two-decades old Fukuda and Oxford definitions. By using non-specific criteria that have become associated with such a diverse set of unrelated conditions, these terms and the accompanying definitions have become medically and scientifically meaningless. They are impeding forward progress and DHHS should discontinue their use. DHHS should also discontinue the dissemination of “CFS” clinical information, like the ‘one size fits all’ CDC CFS Toolkit,http://forums.phoenixrising.me/inde...advocates-launch-petition.23688/page-12#_edn1 that uses a non-specific disease description and includes clinical findings and recommendations for all patients based on Oxford, Empirical or chronic fatigue studies.



Is just wishful thinking. The US government is not going to get rid of a disease that has existed for almost three decades, just because some patient advocates want them to. However if this letter had included requests for extensive testing for people before they are given a diagnosis of CFS, as I have outlined in this tread. Then people would be properly diagnosed with what is really wrong with them, instead of getting a meaningless CFS diagnosis.

Article 3. of this letter states

Manage the transition to the Canadian Consensus Criteria: This includes the adoption and proactive dissemination of appropriate medical guidance like the International Association for CFS/ME Primer,[ii] available through DHHS’ Guidelines.gov. It also includes the establishment of a research program focused on ME, updated insurance guidelines for Medicare/Medicaid, the establishment of disability guidelines for ME and similar transition activities. Most importantly, it must include a plan to care for those patients who have received a diagnosis of "CFS” but do not meet the CCC criteria for ME. These individuals should be properly evaluated and diagnosed where possible. If unexplained conditions remain, additional studies will be needed to understand these conditions and establish more appropriate names and definitions. The continued use of the overly broad “CFS” and Fukuda for these patients is not appropriate.



Everything in article 3 is not applicable to ME, because the CCC is not a ME definition. The International Association for CFS/ME Primer, includes sections on graded exercise therapy (GET) and Cognitive Behavioral Therapy (CBT) more information on this can be found here http://www.mecfsforums.com/index.php/topic,16318.0.html why on earth as PENE (post-exertional neuroimmune exhaustion) is supposed to be a symptoms of ME, would anyone be wanting GET for ME patients, the negative effects of this on ME patients has already been extensively objected to in the UK, were it has been forced on patients, based on the recommendations from amongst others the Wessely School of Psychiatry.

This letter states

“Most importantly, it must include a plan to care for those patients who have received a diagnosis of "CFS” but do not meet the CCC criteria for ME.”

However the writers of this letter appear to have already decided who the people who don’t meet the criteria of the CCC are, they state that

As a result, the term “CFS” has become an amorphous umbrella associated with a diverse set of unrelated conditions that include depression, deconditioning[iii], medically unexplained chronic fatigue, school phobia, and for some researchers and clinicians, fatigue due to “excessive rest”[iv] or “false illness beliefs”

They seem to be of the opinion that most of the people who don’t meet the CCC criteria have some form of mental problem.

I think it would be more appropriate to be pointing out that many of the people who don’t meet the criteria in the CCC have very serious diaseases and that anyone who doesn’t meet the CCC criteria should be extensively tested to find out what is wrong with them, and that the testing requirements to do this provided by the CDC are terribly deficient.

Article 4. States

Engage ME stakeholders in the planning and implementation: In keeping with President Obama’s commitment to Open Government, the key stakeholders – ME patients and ME experts – must be engaged in a full and open partnership to plan for and ensure implementation of this change. We are the ones that best understand this disease and will provide valuable input to these activities.



I must admit that I’m struggling to know what emotion I should be feeling, should I be falling of my chair laughing? Or be completely outraged?

How can the US CFS advocacy groups responsible for this letter say that

“the key stakeholders- ME patients must be engaged in a full and open partnership.”

When the US CFS advocacy groups, responsible for this letter, did not even tell the Key stakeholders, the ME patients, that they were doing this, or asked them if they would like to have any input.

I wouldn’t be surprised if when the US government becomes aware that these patient advocacy groups are not consulting with the patients that they imply that they represent. That they would be, very annoyed.

It is my personal opinion that this letter should have included a statement of potential conflicts of interest.

This is just my personal opinion, but things that could potentially be consider potential conflicts of interest by some are

In “The rational for these recommendations”

It states that

“In October 2012, the CFS Advisory Committee (CFSAC) recommended that DHHS convene a workshop by December 31, 2012 or as soon as possible thereafter to “reach a consensus for a case definition useful for research, diagnosis and treatment of ME/CFS beginning with the 2003 Canadian Consensus Definition”

I’m of the opinion that it may have been helpful to Kathleen Sebelius Secretary of the DHHS, to know that

Kenneth Friedman, who is PANDORA’s, Policy Advisors, see http://www.pandoraorg.net/Advisors.html

Is a none voting member of CFS Advisory Committee (CFSAC)

In my opinion, PANDORA should also declare that it has nominated people for the CFSAC and they have been accepted to serve on the CFSAC.

Due to the fact that nobody knew who was nominating people for the CFSAC Jennie Spotila used her legal skills to find out the full article about it can be viewed here http://www.occupycfs.com/tag/pandora/

She states

“I filed a FOIA request on July 23rd. On September 20th, I received copies of the letters and emails that nominated the current voting members of the Committee. Here is what I found:



Dr. Gailen Marshall, Chairman of the CFSAC was nominated by Dr. Ronald Glaser. At the time of he submitted this nomination (September 2009), Dr. Glaser was serving as a member of the CFSAC. Dr. Marshall was appointed to the Committee on May 10, 2010.

Dr. Adrian Casillas was nominated by Dr. Gailen Marshall in August 2011 (while Dr. Marshall was serving as a member) and was appointed to the Committee on June 13, 2012

Dr. Dane Cook was nominated by the CFIDS Association in September 2009, and was appointed to the Committee on May 10, 2010.

Dr. Lisa Corbin was nominated by Dr. Ermias Belay of the Centers for Disease Control in August 2011. Dr. Belay first served as the ex officio representative from CDC to the CFSAC several months later in November 2011. Dr. Corbin was appointed to the CFSAC on June 13, 2012.

Dr. Jordan Dimitrikoff was nominated by Dr. Hope Ricciotti, Vice Chair of the Department of Obstetrics and Gynecology at Harvard Medical School in September 2010. He was appointed to the Committee on May 10, 2011.

Dr. Mary Ann Fletcher received multiple nominations over the course of several years. In September 2009, both Dr. Glaser (a member of the CFSAC at the time) and Dr. Fred Friedberg of the IACFS/ME submitted letters in support of her nomination. In September 2010, the Miami CFIDS Support & Advocacy Group nominated Dr. Fletcher, and two individuals also wrote in support. Finally in August 2011, the Miami group nominated her again four individuals wrote in support. Dr. Fletcher was finally appointed to the Committee on June 13, 2012.

Ms. Eileen Holderman was nominated by P.A.N.D.O.R.A. in September 2009 and was appointed to the Committee on May 10, 2010.

Mr. Steven Krafchick was also nominated by P.A.N.D.O.R.A. in September 2009 and was appointed to the Committee on July 1, 2010.

Dr. Susan Levine nominated herself to the Committee in September 2009 and was appointed to the Committee on May 10, 2010.

Dr. Ann Vincent was nominated in October 2010 by Dr. J. Michael Miller of the Centers for Disease Control. Dr. Miller was serving as the CDC’s ex officio representative to the Committee at the time. Dr. Vincent was appointed to the Committee on May 10, 2010

Dr. Jacqueline Rose nominated herself to the Committee in August 2011. She was appointed on June 13, 2012, but then resigned several weeks later.

I am struck by the distribution of nomination sources: two members (Dr. Vincent and Dr. Corbin) were nominated by the serving ex officio representative from CDC; two members (Dr. Marshall and Dr. Casillas) were nominated by serving voting members of the Committee; four members (Dr. Cook, Mrs. Holderman, Mr. Krafchick, and Dr. Fletcher) were nominated by CFS organizations; two members nominated themselves (Dr. Levine and Dr. Rose); and the last member (Dr. Dimitrikoff) was nominated by a colleague at Harvard. This does not look random to me. It looks more like a score card with careful selection among the different sources. Consider the 2012 appointees: one successful nomination each from CDC, a Committee member, a CFS organization, and a self-nominee.”

I’m certainly not accusing anyone of anything, but as PADORA and the CFIDS Association appear to be close, PANDORA in 2008 - received $5,000 from ProHealth and CFIDS Association of American see http://www.pandoraorg.net/Grants_Received.html

And the CFIDS Association has employed Susan Vernon who worked for the CDC under the head of the CDC CFS department WC Reeves.

I would understand if some people felt a certain sense of unease that the CDC, CFIDS Association and Pandora are responsible for so many nominations to the CFSAC.

In my opinion it should also have been declared that, Mike Munoz the Financial Advisor of PANDORA is also the executive director of the Rocky Mountain CFS/ME and Fibromyalgia Association board. As the Rockey Mountain CFS/ME and Fibromyalgia Association is also a signatory to this letter to the DHHS, in my opinion the close association between these two CFS advocacy groups should have been declared. http://www.pandoraorg.net/Advisors.html

In my opinion, any group that receives grants from any group or individual associated with the Pharmaceutical Industry, should declare this when addressing the US government

PANDORA has received these grants

2013 - $5,000 grant from Purdue Pharma.

2012 - $10,000 grant from Purdue Pharma

2012 - $7,500 grant from Hemispherx Biopharma

2007 - $10,000 from Purdue Pharma

2005 - $10,000 grant from Forest Laboratories.

2004 - $5,000 grant from Forest Laboratories.

See http://www.pandoraorg.net/Grants_Received.html

As statements from Leonard Jason are included in this rational for the US CFS advocacy letter. It is my opinion that it should have been declared that Leonard Jason is on the advisory board of Chronic Fatigue Syndrome, Fibromyalgia, & Chemical Sensitivity Coalition of Chicago who are the lead signatories of this letter to the DHHS, see http://cfccc.org/about.htm

So there is my synopsis of why in my opinion nobody should sign this petition. As this tread is about Dr Ungers reply to the letter sent by the US CFS advocacy groups, Commenting on the letter by the US CFS advocacy groups, and the US CFS advocacy groups is certainly remaining on topic!

I feel that I have got my message across loud and clear, to anyone who wants to read it. As there is only a very small number that have signed this petition. It appears that very substantial numbers of people also do not think that the recommendations in the letter by the US CFS advocacy groups are a good idea.

So as I have other things to attend to, I will take a break from this tread.

All the best golden, thank you for your input into this tread!!!!

 

Regardless of what is ideal, our first requirement is to pursue goals which are achievable.

You seem to believe that DHHS will adopt the CCC, call it ME and collapse CFS. But getting ME separated from CFS might turn out to be a more achievable goal.

 

What credibility would any of our advocates be left with for any future advocacy action after such a shambles?

Does the credibility of our advocates depend on consistency? Do you find consistency between this year's letter to DHHS and last year's Joint Request for Action, or the presentation made to NCHS in 2011, or the cited documents written by the International Consensus Panel?

 

I am astonished that you do not think that this initiative, if supported, and ultimately adopted, would hugely improve the science and our lives. GET, CBT as suggested by CDC, the Reeves definition, and the term CFS all ultimately severely exacerbate ME in many patients, deprive us of needed and deserved support and understanding and even kill some ME patients!

I think your comment that a statement referencing A quote from Carruthers et al. was "intellectually dishonest" is completely untrue and your making such statements is harmful to us as a patient community. Please, let's try to work together- our survival depends on it.

Please take care to quote accurately if you intend to accuse. I don't believe that the recommendations set out by this initiative will be adopted by DHHS, and I've already expressed my concern about the dangers that exercise can present for ME patients being treated according to the ME/CFS Primer.

I stand by my comment about the impropriety of taking a quotation out of the context of one set of recommendations and using it to support a substantially different initiative, especially when the quotation isn't accurately attributed. During the weeks prior to the petition's launch, I had already raised my concerns about the failure to contact those cited in the letter to DHHS. The patient community should be aware that the two sets of recommendations are not the same.

You may disagree with my statements, but you have no grounds for claiming that “making such statements is harmful to us as a patient community.” As I wrote in a post that you "liked" last month, “You can measure any group by the way that it handles legitimate dissent.”

 

The CDC does use CFS and ME interchangeably.

It doesn't help matters for the patient community to remain at odds with the scientific community concerning the usage of the terms ME and CFS. Dr. Unger has complained that the CDC can't give good guidance while there is disagreement in the field. She told CFSAC, "There is confusion in the field about whether it should be the same thing, whether it should be two things, whether it should be a hyphen name. Until there is clarity of what we are talking about, we cannot give good guidance." Later she wrote, "Opinions of advocates, clinicians and researchers remain divided about whether CFS and ME are the same or different entities. We are following the discussions with interest and would consider any consensus that is reached by patient groups and the scientific community going forward."

We should be following the lead of the International Consensus Panel concerning the usage of these terms and the separating of ME from CFS.

 

Hi Everyone,

It appears to me that a major cause of disagreements related to ME and CFS are caused by the fact that many people involved do not have a good understanding of what ME is, because the relevant and correct Scientific and Medical evidence has not been read. I do appreciate that many individuals and organizations that should have made this information available to the public have not done so, which has made it hard for people to even know that it exists, let alone know where to find it.

I also appreciate that people are sick and may have trouble reading often complicated medical literature. However if any constructive conversations about, or advocacy for ME is to be achieved, people need to be aware of the true facts and read the literature that I will provide below. Thank you.

Myalgic Encephalomyelitis (ME) got its name and was coded as a Neurological disease by the WHO in 1969, because of a number of epidemics of a similar nature that the researchers at the time were unable to find a cause for. Many of these epidemics were intensively research, and tests showed that the patients failed Neurological and Muscle function tests. It was given its name because of the scientific and medical evidence.

I ask everyone to take the time to read and get a good understanding of the Medical and Scientific facts, which were found during the investigation of the Royal Free Hospital ME Epidemic, and published, in the British Medical Journal in 1957, found here

AN OUTBREAK OF ENCEPHALOMYELITIS IN THE ROYAL FREE HOSPITAL GROUP,

LONDON, IN 1955

BY THE MEDICAL STAFF OF THE ROYAL FREE HOSPITAL

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1962472/pdf/brmedj03125-0013.pdf

More detail of this ME epidemic, that explain things like how they worked out the incubation period for ME can be found in this article

EPIDEMIOLOGICAL ASPECTS OF AN OUTBREAK OF ENCEPHALOMYELITIS AT THE ROYAL FREE HOSPITAL, LONDON, IN THE SUMMER OF 1955

BY NUALA CROWLEY, MERRAN NELSON AND SYBILLE STOVIN Bacteriology Department of the Royal Free Hospital School of Medicine, Royal Free Hospital, Gray's Inn Road, London, W.C. 1

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2217874/pdf/jhyg00143-0110.pdf

If people wish to read more of the medical literature on ME it can be found here http://forums.phoenixrising.me/index.php?threads/historical-me-research-literature-and-related-information.10282/

If people read this medical literature, which was used as the basis for giving ME its name and WHO Neurological coding. They will find that ME is a Neurological disease, because the patients failed testing of the Cranial Nerves from the Brain. For those that do not know about Cranial Nerves they are explained here http://en.wikipedia.org/wiki/Cranial_nerve and how they are tested is explained here https://en.wikipedia.org/wiki/Cranial_nerve_examination

Damage to muscles was also recorded in ME patients using an Electromyography.

What the medical researched showed is that ME is a Biphasic disease (two phases) acute onset infectious disease of presumed viral cause, that has an “incubation period of seven days or less and five to six days for the majority.” It causes scientifically measurable damage to the nervous system, namely the Cranial nerves, and Scientifically measurable damage to muscles. All the potential explanations for ME, that were known at the time including large numbers of possible viral, bacterial and tick born disease, and poisoning etc had been ruled out. It was found to be a disease that had an initial onset set of symptoms, which are not those of CFS, and then in individuals that failed to make a full recovery another set of symptoms became apparent that are also not those of CFS.

The scientific and medical evidence from which ME got its name and WHO ICD code, shows that ME is a very real disease, with a known incubation period, that causes scientifically measurable damage to the Cranial Nerves and Muscles of its Victims. This is what ME is!

It should also be noted that because it is a Medical and Scientific fact that ME has a incubation period of between 5-7 days, this rules out every infectious agent that has a longer incubation period such as Epstein Barr virus that has an Incubation period of around 40 days and HHV-6 which has an incubation period of 12-14 days. This incubation period and the proven infectious nature of this disease, also rules out the possibility that it is genetic, auto immune or caused by psychiatric illnesses.

The reality is that there has been virtually no research on ME since the mid 1980s, because what Medicine and Science have proven ME to be, has been ignored.

As it is very obvious from reading the real literature on ME, that ME is not the vague fatiguing illness that people have to wait six months before they get diagnosed with, found in the CCC.

My opinion is that people should not sign the petition that is asking for the CCC to be used and that we should all just pretend that it is a ME definition, when it isn’t, it says that ME and CFS are the same disease and calls it ME/CFS.

Again I appreciate that because of the serious nature of peoples illnesses they may find it hard to read the above ME literature, however I would like to ask those that can to try. Because we cannot make progress and get people the help they deserve, if people are unaware of the true Medical and Scientific facts about ME.

Thank you

All the best

 

I'd feel happier about the new attempts at a ME criteria if there was a comparison between the new population and pre-CFS ME people (like the Royal Free survivors).

Until then we don't know if the two groups are the same. We don't know what to compare though. Although we can make a guess on existing tests.

Please don't quote things from the pages of Dr Hyde unless you have checked his sources (i.e. if there is a published paper on a group of patients with a genuine ME dx or a direct report from the findings of an epidemic or one of the doctors of the time reported it). He isn't Dr Ramsay or one of the original ME docs.

These are his opinions. I'm very glad for him and grateful that he keeps the ME fire burning. Even someone as experienced as Hyde could be simply wrong.

 

Just one point from the peanut gallery.

It's all about the people.

Action needs to be taken, but it has to be the right action. Signing a petition with a few buzz words may do more harm than good if the objectives are not well thought out.

Peter Staley describes how AIDS activists dealt effectively with those in charge of US government agencies:

You had to be an expert. I mean, you had to talk the same language that they were talking. So we spent a great deal of time on self-education. We learned all the science. We became our own experts, and we earned their respect by doing that. It took some time. Our first meetings, we were pretty green. But by 1989, ACT UP was really impressing the scientists and those in government who were involved in the research effort (10:30 – 11:00):

To be effective, any advocacy consensus needs to be aligned with the consensus of experts.

 

I'd feel happier about the new attempts at a ME criteria if there was a comparison between the new population and pre-CFS ME people (like the Royal Free survivors).

Until then we don't know if the two groups are the same. We don't know what to compare though. Although we can make a guess on existing tests.

Please don't quote things from the pages of Dr Hyde unless you have checked his sources (i.e. if there is a published paper on a group of patients with a genuine ME dx or a direct report from the findings of an epidemic or one of the doctors of the time reported it). He isn't Dr Ramsay or one of the original ME docs.

These are his opinions. I'm very glad for him and grateful that he keeps the ME fire burning. Even someone as experienced as Hyde could be simply wrong.

Devil's advocate: Ramsay never came up with a diagnostic criteria specifically, although I also hold him in high regard. One could 'pick and choose' from his words and seek to find comfort in those bits that appear to apply to oneself. Others could - and do - discount his predominant observations of course. I don't place much faith in opinions any more.

I think we're past that now as we are with these debates about labels and criteria. Hyde (and others) should put their evidence - if it comes from dealing with patients in clinic - on the table and quantify it. Step-up and contribute to the various networking efforts now taking place. Shouldn't be up to others to promote him or his ways.

Anyway:

Dr Ramsay’s description included the following:
The onset of the disease may be sudden and without apparent cause… but usually there is a history of infection of the upper respiratory tract or, occasionally, the gastrointestinal tract with nausea and/or vomiting. Instead of an uneventful recovery, the patient is dogged by persistent and profound fatigue accompanied by a medley of symptoms such as headache, giddiness, muscle pain, cramps or twitchings, muscle tenderness and weakness, paraesthesiae, frequency of micturition, blurred vision and/or diplopia, hyperacusis, tinnitus and a general feeling of ‘feeling awful’… the phenomenon of muscle fatigability is the dominant and most persistent feature of the disease and in my opinion a diagnosis should never be made without it. …If muscle power is found to be satisfactory, a re-examination should be made after exercise; a walk of half a mile is sufficient, as very few ME cases can manage more… Restoration of muscle power can take three to five days or even longer.
From Post-viral Fatigue Syndrome by A. Melvin Ramsay MA MD.
Taken from ME Association.

Only posting because I'm working on some research at the moment and happened to come across it earlier. Am not criticising in the least what you said mate.

 

Hi Gabby RE



I think the most apropriate response to Dr Ungers reply, should be, Dr Unger as you very clearly in your reply state that ME and CFS are different conditions, why is there no government spending on ME, why has the CDC not provided the medical community with a definition of ME, and why has the CDC not made the medical community aware of ME or done any thing to stop its spread, this is an obvious breach of the CDC pledge to the American people see http://www.cdc.gov/about/organization/mission.htm which must be corrected imediatly.

All the best

They really do need to be pulled up on that..

that's their legal loophole (safety net) when those who have be badly treated due to getting CFS diagnoses from their doctors start hitting the court systems over the poor treatment and abuse and harm from GET. The CDC will say its not their fault but will be saying the people were wrongly diagnosed by their doctors as having CFS when they had ME and hence were wrongly treated.

They truely need to be forced to clearly clarify it as far as treatments go of ME and CFS on their site and if they believe ME patients should be being treated like CFS ones. While not being clear.. they can play both cards, either way they want and win in courts.

I wish our advocacy groups would get onto them about this. If they see ME and CFS as being different.. well do they think then a ME patient should be treated the same as a CFS one?