Last spring, members of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) ruled that they wanted the CDC Toolkit about "CFS" removed from the CDC website because it’s inaccurate and because it’s giving false information to millions of doctors about ME. For instance, the Toolkit endorses Cognitive Behavioral Therapy and Graduated Exercise Therapy (GET), which have been shown not only to be unhelpful with people with bona fide CFS but GET can actually be harmful. That's because the hallmark of ME is post-exertional crashing. The more you do, the worse that crashing generally is, and sometimes patients don't recover from those crashes.
Furthermore, the Toolkit states that there are no labs and diagnostic tests other than routine labwork to rule out other diseases that mimic ME, when in fact this is untrue. Many tests show abnormalities with ME patients. For example, bona fide ME patients usually exhibit low natural killer function and abnormal tilt-table testing for autonomic dysfunction, and several published studies attest to these abnormalities.
At the CFSAC meeting this month, head of CFS research Dr. Beth Unger was asked by CFSAC member Steven Krafchick if the Toolkit was going to be taken down. And Dr. Unger replied, “No.”
I emailed CDC a list of questions about the Toolkit, and below was the response. Most problematic, CDC stated in its reply: "The
information in the Toolkit is not inaccurate, and we have verified this
repeatedly in discussions with clinicians who care for CFS patients."
Given that the Chronic Fatigue Syndrome Advisory Committee has made a strong recommendation to remove the Toolkit, and given that the Toolkit is inaccurate, why hasn’t it been removed?
"CDC continually reviews and assesses the best way to present information. CDC has determined that the agency’s website is an appropriate channel for providing the CFS Toolkit information to patients, clinicians, other stakeholders, and the public. This information is also available in hard copy in the form of booklets. The information in the Toolkit is not inaccurate, and we have verified this repeatedly in discussions with clinicians who care for CFS patients. We have plans to revise the presentation and clarify issues that have been identified by CFSAC member Eileen Holderman and Dr. Lily Chu. There still remains a need for basic introductory information about this illness for primary care physicians, including those serving Spanish-speaking populations. The Toolkit, in both its English and Spanish versions, serves this need."
Who at CDC is responsible for making the decision to keep the Toolkit?
"For most CDC websites, content decisions are reached through a collective understanding among various CDC professionals with expertise in scientific subject matter and the presentation of complex public health information. CDC also consults with clinicians and other interested individuals about the ongoing need for information about CFS and has been advised that the Toolkit helps meet this need. CDC will continue to work with others to review the Toolkit and update and expand this information as appropriate."
Why isn’t CDC listening to the Chronic Fatigue Syndrome Advisory Committee?
"CDC does listen to the Chronic Fatigue Syndrome Advisory Committee places great value in recommendations made by the Chronic Fatigue Syndrome Advisory Committee. We consider all recommendations made by this committee. For example, the recent revision of the CFS website was initiated in response to CFSAC recommendations. CDC solicited specific comments from CFSAC members on the CFS web page and used these comments to make improvements to the site. We are taking the same approach with the Toolkit."
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Blaming it on their chosen consultants will not save them. When they are investigated, that will not matter.
ReplyDeleteThe entire website, not just the toolkit, needs to be taken down.
Mindy....the response of the CDC to your query (regarding the CFSAC' recommendation of removing the 'cfs toolkit') is outrageous! Enough is enough. To say that the information in the Toolkit 'is not inaccurate' is an outright lie. Their assertion that they (the CDC) will actually listen to comments (ie solicited 'specific comments from members of the CFSAC') to make 'improvements' to the toolkit is not to be believed. (the only effective 'improvement' - and the one that the ME community has repeatedly asked for - is REMOVAL - ask ANY patient..ask any ME literate Doctor! for that matter)
ReplyDeleteIt's not only about removing the INACCURATE and frankly - outdated Toolkit - it's about WHAT to REPLACE it with. (And the ME IC PRIMER/ICP fits the bill beautifully!)
I STRONGLY believe that our best hope overall is promotion, acceptance and implementation of the new MYALGIC ENCEPHALOMYELITIS (adult & paediatric) INTERNATIONAL CONSENSUS PRIMER (ICP)- the companion Physicians Guidelines to the 2011 ME International Consensus Primer.
THIS is the PRIMER that patients have been waiting for - while we held on for dear life for such a long time!(on a personal note - while waiting the several years it took for the ME ICC and the IC Primer to be compiled and published - my husband was diagnosed with ME! many years after I was.)
I'll admit that the release of TWO ME 'PRIMERS" (the ME ICP and the IACFSME PRIMER) is confusing and IMO, unfortunate - in the timing.
But, if we pick only ONE to promote (and we MUST do this to lessen the confusion of any contradictory or 'watered-down' information), I feel it should be the ICP, and MANY patients that I have talked with agree.
I can imagine that there will be great opposition to this new PRIMER by the CDC, BECAUSE it outlines the logical reasons for abandoning the use of 'CFS" and its hybrids (ME/CFS, CFS/ME & CFS/CF) in favor of the scientifically accurate term - Myalgic Encephalomyelitis/ME (logical AND simple common sense, as well as compliant with the WHO classification rule that a disease cannot be classified under more than one rubric.)
The ICC/IC PRIMER strongly recommends that ONLY the name ME be used to identifiy patients meeting the ICC criteria. (Patients who fulfill the ICC criteria have ME...those who do not would remain in the more encompassing CFS classification).
(And while the ME ICC/ICP abandons the 'label' CFS...the PRIMER certainly doesn't dismiss the broad components of fatiguing illnesses. Rather, the ICC is a refinement of patient stratification.)
I am disappointed that the CFSAC has not yet endorsed THIS (the ICC/ICP) excellent PRIMER - but hope that it soon will; and that the PRIMER will be universally accepted by medical professionals, ME patients and patient advocates and orgs (it is my understanding that the PDF 'booklet" was coincidentally released to the public for the first time - as a not for profit educational document - right before, or possibly during the CFSAC meeting!)
However, the ME patient community has been eagerly waiting for these accompanying Physicians Guidelines since the publication (August of 2011) of the ME ICC - and now that we have it, we are NOT willing to compromise OR stagnate by allowing the PRIMER to be ignored...or worse - slip farther behind by remaining in 'that heterogeneous, multi-rubric POT'- called 'chronic fatigue syndrome'! (as the CDC would have us! - and keeping the TOOLKIT means keeping 'CFS').
There are MANY of us who stand ready to advocate for the ICC PRIMER (it is sharp, concise, scientifically AND historically accurate...and also shows great compassion in its recommendations for adults with ME - and in particular, its handling of our fragile and vulnerable ME children!) And if that means we must advocate, promote - fight for its acceptance by the CDC - I say we attempt THAT!
best regards...jackie
btw...the new ME ICPRIMER: http://www.hetalternatief.org/ICC%20primer%202012.pdf
ReplyDeleteThis misleading toolkit and the CDC's obstinate refusal to change it are a terrible problem for M.E. patients. Our doctors go straight to the CDC for information about our illness, and this nonsense is what they see. No wonder they treat us like pariahs.
ReplyDeleteThank you, Mindy, for your recognition of this problem.
I totally agree!
DeleteThe Toolkit is just part of the problem with the CDC website. The new CME course for medical professionals, Diagnosis and Management of CFS, also recommends CBT and GET for CFS with Wessely School references. Unfortunately, the course is co-authored by Drs. Klimas and Bateman so the CDC can claim the leading clinicians participated. Very frustrating.
ReplyDeleteWhat a load of corporate-speak from the CDC and how typical that no-one is taking responsibility for the decision. Appallling.
ReplyDeleteThanks, Mindy, for continuing to document this.
It was precisely the recommendations on the CDC website (CBT and GET) that contributed to my going from having mild/moderate CFS (still able to work full-time) to having severe CFS (bedridden and completely disabled).
ReplyDeletehistorically speaking, and apparently to this very day, it appears that the cdc hates us me/cfs patients. why do they hate us so much? thanks, mindy, for yr ever-important work. -- rivka
ReplyDeleteCFS toolkit is for CFS. It is not for ME. CFS is not ME. This is patients 'false illness beliefs' that patients believe or are told by the bogus US ME/CFS groups that they are the same. CFS info/research will never help those with ME. Do not expect it to. Keep CFS and you'll continue to get the 'treatments' associated with it.
ReplyDeleteME ICC and ME IC Physicians guidelines absolutely reject combining the 'cfs modal' with ME:
'Our panel strongly recommends that ONLY the name 'MYALGIC ENCEPHALOMYELITIS' be used to identify PATIENTS MEETING THE ICC because a distinctive disease entity should have one name. Patients diagnosed using broader or other criteria for CFS or its HYBRIDS (OXFORD, REEVES, LONDON, FUKUDA, CCC, etc) SHOULD BE REASSESSED WITH THE ICC. Those who FULFILL THE CRITERIA HAVE ME; those who DO NOT would REMAIN IN THE MORE ENCOMPASSING CFS CLASSIFICATION.'
Also: 'REMOVE patients who satisfy the ICC from the broader category of CFS. The purpose of diagnosis is to provide clarity. The criterial symptoms, such as the distinctive abnormal responses to exertion can differentiate ME patients from those who are depressed or have other fatiguing conditions.
NOT ONLY IS IT COMMON SENSE TO EXTRICATE ME PATIENTS FROM THE ASSORTMENT OF CONDITIONS ASSEMBLED UNDER THE CFS UMBRELLA, IT IS COMPLIANT WITH THE WHO CLASSIFICATION RULE THAT A DISEASE CANNOT BE CLASSIFIED UNDER MORE THAN ONE RUBRIC.'
I agree with 'Anon's' comment that the ICC primer ought to be implemented. Anyone with authentic ME will probably qualify to tickbox not only the most limited requirements for diagnosis, but every single sub category of every category within the Primer. It truly discriminates the genuine cohort from the mis-diagnosed.
ReplyDeleteWe need to know WHICH physicians on the CFSAC who are supposedly agreeing with Dr. Unger on the contents of the Toolkit; is Unger referring to. They need to be publicly outed and pressured.
ReplyDeleteFurther, the only way the CDC Toolkit is coming down is if some savvy internet hack finds a way to crash it down.
The CDC doesn't care about this disease, clearly. Then never have, and they have never had to--until now. There is a new sheriff in town and his name is Obama. When a president of the United States elevates the importance of a disease, everybody in the healthcare industry knows it. Now the CDC weasels know that big brother is breathing down their back, that somebody above them is watching. Given this new scenario, I think patients will find that the 'agency' will start treating this disease a little more fairly. We will make sure of it.
ReplyDelete