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CDC Interview on the CFS Toolkit

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
I think their recent review of the web site is nothing but a PR stunt. Now they can say that they listened to feedback, even though the changes are only at the token or cosmetic level.

If you remember, one of the CFSAC members said he wanted follow up discussion to review if appropriate changes had been made, and the CDC said there would be no follow up. They would make whatever changes they make, and that's that. No more discussion.

Does this sound like the behavior of an administrator who wants to make sure she gets it right? I think not.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi Andrew, that is my suspicion too. However, we have to see the final site to be certain. I expect they will fail yet again, but they might not. If they do, then advocacy has another target. The CDC seem very good at creating things that can be objected to. Bye, Alex
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I think there might be small signs of change at the CDC. I can't be sure, but it seems like they are beginning to take ME/CFS more seriously. (But I'm ever the optimist.) For example, they are creating a new diagnostic criteria, which might prove to be very helpful, depending on how they do it. Unger has at least appeared to engage constructively, and in person, with the CFSAC, although she's not carried out what they wanted. I think the CDC will only turn around like an oil tanker, but there might be signs that it's begun to turn around. Anyway, I could be totally wrong, so please ignore me if I'm not being helpful. I tend to have these occasional optimistic turns, which aren't always helpful!
 
Messages
15,786
I think the CDC will only turn around like an oil tanker, but there might be signs that it's begun to turn around. Anyway, I could be totally wrong, so please ignore me if I'm not being helpful. I tend to have these occasional optimistic turns, which aren't always helpful!

I agree that they're turning ... but because the waves are pushing the ship around and they can't stop it, not because anyone at the helm wants to turn it around.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I agree that they're turning ... but because the waves are pushing the ship around and they can't stop it, not because anyone at the helm wants to turn it around.

Maybe Unger is willing to engage and make some changes? (Whereas Reeves was never willing to move CFS away from the psychological model.)
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I think an open letter from our ME/CFS clinicians to the CDC would be great. Who would have the contacts to organise this?

The issue that ME is being dumped with CFS compounds the matter and hence there will be some lack of support of ME/CFS clinicians having "CFS" info which isnt in fact ME (and the CDC dont use ME criteria anyway) changed.. as they are not the same thing. The only way to get around that one is if the CDC separates ME and CFS from each other and then many of the big name ME/CFS clinicians could support the ME info.

Any changes the CDC makes will only be cause they are being pushed HARD. Im sure ones high up there must knew they were the cause of the whole ME and CFS mix up to start with (Lake Tahoe). To admit they made a big mistake, maybe has big legal reconcussions on them if people wanted to sue etc
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
The CFSAC recommended the toolkit be removed. The CDC declined. I don't see that as a willingness to improve. That is unless they have some magic changes prepared for the toolkit.

As it looks now, Unger is a better politician than Reeves, but other than that, she is cut from the same cloth. But I hope I'm wrong. I really do.
 

Nielk

Senior Member
Messages
6,970

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."

Change can only take place if one admits that there is something wrong with the present situation. The CDC clearly does not see that there is anything wrong with their current toolkit.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
My guess is they are still hung up on the claim that CBT and GET are "evidence based". Given the probable study bias range, misdiagnosis rates and tiny outcomes that do not improve functional capacity, the claim to CBT and GET being evidence based is ludicrous. Most of those researching biomedical ME understand this. I think researchers at the CDC might get this in time, hopefully, but first they have to engage with the science and avoid rubber stamp dogma.

Bye, Alex
 

Ember

Senior Member
Messages
2,115
We should all be supporting the ICC tools 100%.

The Toolkit explicitly applies to CFS, not to ME.
Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC.... 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 (http://hetalternatief.org/ICC primer 2012.pdf).
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
The people in the Lake Tahoe cohort have ME. The name given to them was CFS. It is to this population, and people like them, that the toolkit is being applied to. If the CDC is claiming otherwise, then they are just trying to weasel out of the big blunder they made with ME.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
They say "it's accurate," but this is a total crock. For one thing, they have clearly stated that the Emperical definition is a research definition, and not meant for clinical use. If it's not meant for clinical use, why do they put it into their clinical tool kit. Why are they not telling clinicians that they are giving them an unsuitable definition. The answer is they have no integrity. And how do they back up their claim about GET. They do not cite any studies that use their definition of CFS. What they do is cite Oxford criteria studies, which have definitions that disagree with the CDC definition, the Canadian definition, and the International definition. .

In fact, Dr. Unger admitted at a CFSAC meeting that the Reeves Empirical Criteria are NOT empirical! But she continues to use it currently in three ongoing studies. She is only marginally better than Reeves. She needs to go NOW! We need a real leader in that position such as Komaroff, Cheney, Peterson, etc., then everything else good would flow from that. I continue to demand she be replaced NOW. Please join me in this demand whenever you can. thanks everyone!
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
A little brainstorming --- how to find a solution to the problem:
maybe we should go above their heads, since they won't budge.
a barrage of letters/emails, with a brief explanation as to why it is wrong and what should replace it ( the ICC/ICP)
sent to ??? Kathleen Sebelius or the White House ( special aide Obama appointed to update him) or ???

For the past year or so I have emailed a long list of HHS brass about twice a week with three demands, one of them being that Unger go, two that the Reeves criteria be dumped and three that funding for biomed research be increased. I occasionally email the White House, but you have to fill out a form every time so this is more time consuming.

I think its very important to start communicating with Ms. DeParle, I believe her name is, who is Obamas "point person" on getting more done on ME at HHS. We have four years, but only four, to wring any progress out of Obamas request to HHS. I'm sure they were just sitting on it to see if he'd be reelected. I really hope it does some good, but we have to be on them constantly these next four years, especially now to get anything out of "Obamas Promise."

What we also really need to do long term is meet with our reps and Senators. That really is the way, other than communication with the white house, that change will occur.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
The people in the Lake Tahoe cohort have ME. The name given to them was CFS. It is to this population, and people like them, that the toolkit is being applied to. If the CDC is claiming otherwise, then they are just trying to weasel out of the big blunder they made with ME.

I agree Andrew.

there shouldn't be a separation into ME and CFS because "CFS" with the ME patients taken out is just idiopathic CF and should be called ICF, not called "CFS", that would just confuse things even further which is what "they" want. What Im saying is there should be just ME and ICF, no CFS. I'm not happy with the name ME/CFS, but it's much better than calling the disease CFS, so I will allow it... for now. : )

Of course, if you are in a place other than the US, you may tend to disagree, considering the even worse history of the name CFS there. But when dealing with the US CDC, I think you really have to see the naming issue from the American perspective, which to me clearly dictates no separation into ME and CFS, but does dictate the appropriate use of ME and ICF and the discontinued use of the very harmful term CFS.
 

Ember

Senior Member
Messages
2,115
Of course, if you are in a place other than the US, you may tend to disagree, considering the even worse history of the name CFS there. But when dealing with the US CDC, I think you really have to see the naming issue from the American perspective, which to me clearly dictates no separation into ME and CFS, but does dictate the appropriate use of ME and ICF and the discontinued use of the very harmful term CFS.
American clinicians and researchers on the ICC panel of experts supported this statement:
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 (emphasis added).
http://hetalternatief.org/ICC primer 2012.pdf
http://hetalternatief.org/ICC primer 2012.pdf
In its NCHS presentations, the Coalition 4 ME/CFS continues to defy the ICC panel concerning ME and CFS:

From “ICD-9-CM Coordination and Maintenance Committee Meeting”
Summary of Diagnosis Presentations
September 19, 2012
Dr. Kogelnik indicated that the term myalgic encephalomyelitis is used in Europe while the U.S. continues to use the term chronic fatigue syndrome, and that the Coalition 4 ME/CFS considers these two conditions (CFS an and ME) to be the same. That is why they want both terms included in the same code (emphasis added).
http://www.cdc.gov/nchs/data/icd9/2012_September_Summary.pdf

From “The New International Consensus Criteria for M.E. - content and context”
By Bruce M.Carruthers, MD,CM, FRCP(C).
Journal of IiME Volume 6 Issue 1 (June 2012)
While it has always been essential, it has now also become urgent to segregate the subset that we are calling ME more clearly, using the ME International Consensus Criteria, so that researchers can confirm/disconfirm their results using patients who have chronic fatigue of this clearly bio-pathological origin. Otherwise the all-inclusive umbrella of “CFS”, in ambiguating natural and psychosocial kinds of fatigue, will continue to dilute the results of any investigations and maintain the pervasive confusion resulting when biopathological kinds are mixed indiscriminately (emphasis added).
http://investinme.org/Documents/Journals/Journal of IiME Vol 6 Issue 1 Screen.pdf

We've been warned that these disputes impede progress.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
We've been warned that these disputes impede progress.

Ember,

Can you expand on this, please?

I understand that ICC says that ME should be separated out from CFS (leaving a CFS diagnosis that does not include ME). I disagree with that approach. It's possible the Americans on the committee disagreed with this, but went along for consensus and realizing this was an international document and a lot of people outside the US take your approach.

Plus I don't always agree with every American clinician, especially Klimas and Bateman and I think one or both were coauthors. They are especially sloppy with the critical issue of nomenclature. I want to throw a rock at my monitor every time I hear the words "chronic fatigue" come out of Klimas' mouth.

I get what you are saying and it has its merits, imo. I admire your passion on this crucial topic. And there are other smart people I respect from outside the US who take your position. I think the ICC approach on this issue, if followed would be an improvement over the current situation, including in the US.

I strongly support the ICC, but I think in the US following that nomenclature approach would be quite harmful (though not as harmful as the present terminology situation). So I agree with the Coalition approach on this issue.

I am sorry we disagree. I don't mean to stress you out! I know this is a contentious issue. : )

Justin
 

Ember

Senior Member
Messages
2,115
Can you expand on this, please?

I understand that ICC says that ME should be separated out from CFS (leaving a CFS diagnosis that does not include ME). I disagree with that approach. It's possible the Americans on the committee disagreed with this, but went along for consensus and realizing this was an international document and a lot of people outside the US take your approach.
The ICP's largest group of authors by nationality is American. “Primer Consensus: The authors, representing twelve countries, reached 100% consensus through a Delphi-type process.” The American ICP authors include:

Klimas, Nancy G, MD; clinician and researcher: microbiology, immunology, allergy
Professor of Medicine and Director: Institute for Neuro-Immune Medicine, Nova Southeastern University, Ft. Lauderdale-Davie, Florida
Director: GWI and CFS/ME Research Center, Miami Veterans Affairs Medical Center, Miami, Florida, USA

Bateman, Lucinda, MS, MD; clinician: internal medicine with focus on ME & FM
Fatigue Consultation Clinic, Salt Lake City
Utah hospital affiliation: Salt Lake Regional Medical Center
Adjunct Instructor: Departments of Anesthesiology and Family and Preventive Medicine, University of Utah, Salt Lake City, Utah, USA

Bell, David S, MD, FAAP; clinician and researcher: paediatrics
Retired clinical paediatrician with many years of experience of ME and CFS, Lyndonville, New York
Department of Pediatrics, State University of New York, (SUNY – Buffalo) New York, USA

Chia John, MD; clinician and researcher: internal medicine - infectious diseases, immunopathogenesis
Clinical assistant professor: Harbor-UCLA Medical Center, University of California, Los Angeles, CA
Director: EV Med Research, Lomita, California, USA

Light, Alan R, PhD; researcher: physiology, neuroscience, medical neurobiology and neuroanatomy, mechanisms of pain & fatigue
Professor: Anesthesiology and Neurobiology and Anatomy; Molecular and Cellular Neuroscience, University of Utah School of Medicine, Salt Lake City, Utah, USA.

Light, Kathleen C, PhD; researcher: behavioral medicine – physiological dysregulation in chronic pain and fatigue disorders, behavioral factors in cardiovascular disease, health benefits of family support, minority and women’s health issues
Professor: Anesthesiology and Psychology, University of Utah School of Medicine, Salt Lake City, Utah, USA.

Stevens, Staci, MA; exercise physiology
Director: Workwell Foundation, Ripon, California, USA

In addition, Dr. Judy Mikovits was an original ME-ICC author.

A year ago, Dr. Unger noted that the “opinions of advocates, clinicians and researchers remain divided about whether CFS and ME are the same or different entities.” She complained, “I have gotten lots of communication from people saying that CFS is different from ME. I have got people that insist that it is the same thing. I think that there is disagreement. 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.” Dr. Unger added, “We are following the discussions with interest and would consider any consensus that is reached by patient groups and the scientific community going forward.”

Dr. Lee told the CFSAC Spring 2012 meeting, “I get e-mails all the time and one of the big ones that I keep getting is, 'Do not put ME in there. It’s different than CFS.”'

In the CFSAC Fall 2012 videos, the FDA & Drug Development presentation (39:07) asks:
Why so few applications? Because the Core is still in question:

- no accepted definition for disease – and controversy besides
- no accepted method for measuring how patients with CFS or ME feel or function
- no accepted biomarker to provide a simple, quantitative measure of disease presence or activity.

Would you invest in developing a treatment surrounded by such uncertainty?
Sandra Kweder elablorates:
And I think if you ask companies, they'll tell you, here is the answer: What companies want is, they need predictability. They need to understand what it is they're studying. How to measure the effect. That is the key. That I am convinced is why there are so few clinical trials and drug development for this condition. The clinical trial community is scattered and fractionated. There is not a large collective effort to change this situation. I firmly believe that once there is, things will change. I can give you examples of where that has happened, conditions that have had absolutely the same challenges: irritable bowel syndrome, functional dyspepsia, depression, prostate cancer and fibromyalgia (which is not on the list). All of those conditions have the same problems. All of them have new methods of study and growing therapeutic armamentariums because a generally agreed upon definition with signs and symptoms and measurement tools that could be employed for that condition were agreed upon, developed, and then there was able to be movement forward (www.youtube.com/watch?v=IGASSh7YV3s).
Perhaps the FDA will offer additional advice to ME and CFS advocates on Thursday:
Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Webinar: Working Together for Change

The Office of Special Health Issues will be hosting a 1 hour webinar that will discuss Patient Advocacy.

The discussion will include presentations from other patient representatives and patient organizations on how they effectively worked with the FDA and other entities.

There will be an opportunity for those of you who live and struggle with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome to ask questions about patient advocacy and how to effectively work with government agencies and drug developers.
http://www.fda.gov/Drugs/NewsEvents/ucm319188.htm
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Good point, Ember. I'm thinking about that and it's a tough one for me. I think splitting ME and CFS would cause a huge amount of confusion that CDC, Wessely et al will inflate to even greater proportions, since confusion is their main strategy and it has worked well. On the other hand, if we continue to debate definitions, it delays drug development. Im still leaning to wanting to just get rid of CFS, because I think clarity is the foundation we need.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
How I see it going is if that part of ICC is accepted that CFS is basically Idiopathic CF, what CDC, NIH etc will do is just increase funding for CFS studies and do no or barely any ME studies. Then they can say, look, all these CFS patients have been clamoring for years for more CFS studies and now were doing them and the studies just confirm even more that these chronic fatigue people are head cases with no consistent bio abnormalities (because all the ME cases will have been excluded).

Then there will be a debate in the wider community: is ME a fake disease? CDC will be saying "These people were saying up til now that they have CFS, now that that's finally shown conclusively to be hysteria they are now trying to create another fake disease (ME) and hop on. Then in another 30 years we'll show conclusively that ME is fake and they'll just create another fake disease and claim they have that one."

You have to understand in the context of the US, no one has heard of ME except the ME specialists and now some folks at FDA, CDC and NIH. As badly as ME is treated in the UK, at least you have had a good number of newspaper articles showing severe ME cases and how debilitating it is. We haven't had that much for CFS, much less ME. So ME will be fresh territory for CDC to smear with Hysteria claims and or "this is so new we don't know the slightest thing about it, it probably is psychological but we won't know for decades for sure, there is just so much science that has to be done."

It's just clearer to have ME and ICF and throw the name "CFS" in the trash.