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

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


Tell DHHS: Fatigue is not a disease

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

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

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


Elizabeth Unger's Reply

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

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

Dear Patient Organizations and Independent Patient Advocates:

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

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

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

Sincerely,

Beth Unger


Satisfied?

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

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

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

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

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

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





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Comments

Why not establish a partnership with ME experts now and ask for the adoption of the ICC? Asking DHHS to adopt a decade-old case definition is also unproductive and harmful to patients.

This campaign is so misleading! The “web of confusion” line comes from the ME Primer, as does the quotation in Mary's message to patients, caregivers and advocates: “Research on other fatiguing illnesses, such as cancer and multiple sclerosis, is done on patients who have those diseases. There is current, urgent need for ME research using patients who actually have ME.” Incorrectly attributed to Dr. Carruthers and used without his permission, that statement by the International Consensus Panel was written in support of the ICC.
 
Unger said:
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.
Well at least they're setting the bar nice and low with their goals. Nothing about understanding the biology or curing it - maybe she wants to give us some anti-psychotics and CBT to make it all go away?

I also love the grouping of those illnesses. How clueless can she continue to be? Describing ME/CFS as a "fatiguing illness" is highly inaccurate, and "medically unexplained" is frequently psych-talk for "psychosomatic". Neurasthenia is also a neurotic disorder according to the ICD-10.

Either she has repeated and extremely unfortunate choice in her wording, or she's one of those "medically unexplained" = "psychosomatic" people. And that sort of grouping of unexplained "fatiguing" illnesses is also (only?) something I've seen psychosomatic theorists engage in.

Unger doesn't belong anywhere near ME/CFS patients.
 
Yeah, she's trying to make us go away quietly and she mentions a 19th century hysterical disease (neurasthenia) in the same breath as CFS? This is why I had to stop reading and posting on political threads - :aghhh::aghhh::aghhh:
 
Sorry where did the quote 'fatigue is not a disease' come from? Thanks.
 
Is PR behind this ?- terrible foggy brain today.... A cliff notes version would be appreciated ....

Could the phrase 'fatigue is not an illness ' be damaging mantra ...?

Fatigue is not THE illness ?

* chronic fatigability not chronic fatigue ...?
 
It is very much a non-answer, isn't it. Sometimes it seems that CDC is still 30 years behind the rest of the CFS/ME community. I'm also not encouraged by the systematic review, as there is so much worthless CFS research out there. Reviewing some selective dodgy behavioural literature, one might conclude that CFS is a simple behavioural fatiguing disorder, treatable with CBT. And yet the biomedical literature shows a complex biological disorder with clear immune dysfunction, and biological markers/abnormalities. So I'm not sure how a systematic review will be able to make any sense of such opposing research paradigms.
 
If Dr. Unger is aware of the issues, then she is aware of the harm that the CDC is causing. Does that make her responsible? Shouldn't it mean she (or delegated people) need to form a group with concerned patients and expert researchers to rapidly change things? A new case definition could be argued for, but its too far off. Harm is being done now.
 
There is a bit of her post which really interested me.

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.
Did anyone else note with that section of her post, that she actually listed ME separate to CFS in that part of her post in her "other chornically fatiguing illnesses". I wish someone would ask her why she's done this? Does she believe ME and CFS ARE separate illnesses or was this an error in her post? I want to know her views on it?

Interesting too how the word "neurasthenia" comes up when she refers to CFS.
 
Officially I think the CDC has considered ME to be a separate disease for a long time, but this is not reflected in treatment advice I think.
 
Did anyone else note ... that she actually listed ME separate to CFS in that part of her post in her "other chornically fatiguing illnesses". I wish someone would ask her why she's done this? Does she believe ME and CFS ARE separate illnesses or was this an error in her post? I want to know her views on it?
Perhaps she (rightly?) views 'CFS' as a non-specific umbrella diagnosis, that includes many 'fatiguing' illnesses, conditions and subsets?
Perhaps she thinks that 'ME' might be a discrete disease, but that there's no evidence for it, or maybe she's paying lip-service to the ME community?
She has repeatedly said that being able to define subsets is essential.
Her current research is attempting to define CFS subsets, using the data acquired from the expert physician clinics.
 
I think even some private doctors are poor in helping people with M.E. because they are hiding behind the CFS smokescreen. They refuse to use M.E. I think, to cover themselves. (sigh ).

I noticed M.E. being used as seperate to CFS in the letter .

As for neurasthenia - it seems this was called soldiers heart and is now called POTS -

I suspect its another physical illness that psychiatry has hijacked.

http://rarediseasesnetwork.epi.usf.edu/ARDCRC/professional/disorders/POTS/index.htm
 
Well at least they're setting the bar nice and low with their goals. Nothing about understanding the biology or curing it. [...] And that sort of grouping of unexplained "fatiguing" illnesses is also (only?) something I've seen psychosomatic theorists engage in.
Compared to the massive bungling in the past, with the funding-misappropriated CFS department spending the first decade floundering in a manner which would make Ron Swanson proud, followed by the second decade of Reeves leading us into a dead-end, I am slightly surprised the CDC under Unger are even doing this much. Whether or not the renewed efforts in recent years will amount to anything useful remains to be seen. Part of me wants to be optimistic but I will certainly not be holding my breath for anything other than the lowest common denominator of the neo status quo.

Did anyone else note with that section of her post, that she actually listed ME separate to CFS in that part of her post in her "other chronically fatiguing illnesses". I wish someone would ask her why she's done this? Does she believe ME and CFS ARE separate illnesses or was this an error in her post? I want to know her views on it?
The way I see it, ME was only mentioned once because it is in the name of the workshop referred to, not necessarily because Unger believes it exists as a disease entity. The CDC have never really been clear on the issue of ME.
 
Is PR behind this ?- terrible foggy brain today.... A cliff notes version would be appreciated ....

Could the phrase 'fatigue is not an illness ' be damaging mantra ...?

Fatigue is not THE illness ?

* chronic fatigability not chronic fatigue ...?
I too am kerfuddled this morrow :)

My brain went into a spin trying to decipher the meaning, then the intent...! All too much for me. Then I couldn't see the 'quote' repeated in the letter and I was like - oh crap. Back to bed :)
 
I too am kerfuddled this morrow :)

My brain went into a spin trying to decipher the meaning, then the intent...! All too much for me. Then I couldn't see the 'quote' repeated in the letter and I was like - oh crap. Back to bed :)
Ha ha - i have hurt myself laughing :)

Its a label nightmare !!!!

:)
 
Can we sign the petition from anywhere in the world or do you have to be a US citizen for the signature to count?
 
I'm very foggy at the moment too - there's a lot of it about!

I was starting to fill in my details but thought I had better make sure of what I was asking for, and was concerned that the Canadian criteria might exclude me due to the apparent necessity for significant pain, which I don't have. So I haven't signed it - yet.

I may reconsider when my head is clearer and I have been able to think about it properly.
 
This morning brings news that the Obama administration has finally allowed the "FDA approved" morning after pill to be sold over the counter, after foot dragging for several years. Essentially, they allowed themselves to be forced to implement a policy they've always supported. This, of course, is crazy. But even in the best cases, truth, facts are not the only things driving government policy.

The CDC has an even greater, more baroque problem on their hands, something that's been staring them in the face for decades, a widespread epidemic that doesn't have a usable, coherent definition that originated with them. How do they go about changing without embracing any responsibility for not confronting the reality of m.e. starting say in 1984 when they sent two irresponsible clowns to Incline Village.

Does Unger ever speak with a sense of history? Of course not. Government seldom does. So much of government is merely reactive, hands are forced by circumstances, and policy changes. There is a kind of interregnum going on at the CDC. The old way is, I believe, over, the new not yet born. That's the space Unger is operating in.

Even if our clinicians and researchers pay lip service to Fukuda, the CDC is, of course, aware that no one experienced has respected it as a definition for a long time. How often do governments explicitly acknowledge error, bad judgement, deliberate, even malicious, neglect?

What I've noticed in the last few months is the willingness of some of the researchers and clinicians to speak out against the historical neglect of m.e, Shungu and Hornig, to mock and eviscerate the PACE trial, Baraniuk, Rowe, and Snell, to assert in an audience that contains Clare Gerada that "anyone who suggests that this might be fixed by exercise therapy should probably be de-registered," Don Staines,​
and to explicitly call the CDC on its procrastination, Kogelnik. And of course, not to be overlooked, the protesting of endless deferral by Fletcher, bad faith by Holdeman, and the strong criticism of the CDC's refusal to adopt the Snell protocol by Krafchick, who, rightly, called this a recipe for failure when looking at the effects of exercise on patients.​
The other day, I saw Pat Fero, a longtime, courageous, m.e. activist had signed a petition sponsored by the WPI. In her accompanying remarks she speaks of her illness, the loss of her son Casey to m.e., and the horror of seeing her grandchild showing symptoms.​
Our researchers and clinicians, are beginning to push back in ways that I haven't observed before. What they can't do is infuse government with the sense of urgency Pat Fero and all of us have. These institutions will change, are changing, but the pace is glacial, and the gap between government complacency and private sector creativity widens every day.​
 
Ha ha - i have hurt myself laughing :)

Its a label nightmare !!!!

:)
This would be funny if it weren't tragic. The advocates can't answer basic questions about their own initiative, and they haven't consulted with the experts. They seem to think that switching from the CCC to the ICC is like upgrading your operating system...no big deal.

If it's the Snell retest protocol you want, akrasia, it isn't in the CCC.