Announcing a survey for meeting with CDC

Dolphin

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Here's the comment I sent in at the bottom for what it's worth (with 500 characters one can't say too much):
Whatever definition the CDC uses should not be the empiric criteria (Reeves et al., 2005). Approximately 2500 people signed a petition specifically against these criteria: http://bit.ly/i1BHgW ; the CFSAC also recommended against them http://bit.ly/hcTV1I . High rates of harms have been associated with exercise programs for ME/CFS (incl. CBT encouraging increased activity) http://bit.ly/eUmBeH - the CDC should not recommend such programs until the safety issue has been addressed satisfactorily
 

Nielk

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yeah

yeah, when I spoke to Marly about this, I told her nine items was a lot. I said maybe we should hear from patients as to which ones are most important.

I figured this type of survey would help us set priorities. After I set it up, I took the survey. Man, I had a hard time deciding. They all seemed important. I imagine others are having the same trouble.

Tina
 
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Cloud

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So hard to decide because all are so urgent.

My comment was something like.....The 9 questions could be condensed into 5 or 6 and still get the same points asked. This may be less intimidating and increase the chances of getting all concerns addressed.

Thanks for the opportunity to participate.
 

Tammie

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Though they are all important, I think that the definition is the single most important followed closely by Dr ed, because if they are studying/educating re the properly defined illness, then the other things may begin to fall in line, and conversely if they continue to use a faulty definition, the other things may not do much good (ie: we will still be studying other illnesses along with or in place of ME/CFS)
 

Dolphin

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Personally I would be worried about a lot of CDC doctor education at this time especially after I heard from a patient advocate that James Jones is in charge of education.
 

Anika

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Some things I would NOT want the CDC CFS program to do - for now

While the issues are all important (though I might phrase some of them differently),
I would suggest a more limited agenda, given that this is the CDC and not the U.S. Department of Health or NIH we're talking about.

The CDC's CFS group is isolated and out of step with the mainstream of biomedical "CFS" research. In my view, their program is actively doing harm to CFS research and patients. If they don't clean up their act, I would prefer that the CDC CFS program be "defunded." Please, keep them away from any more physician education, or requests for more research dollars, or clinical centers...until we are confident they will not be perpetuating harm. Let them fix their attitude, their definition, their research program, and their website, before there is any mention of "educating" physicians or the public, or more research dollars.

So, what should the meeting address?

* Definition and cohorts - I'm not sure I would phrase it as the the survey does, but the concept is there. Jason's proposed adaption of the Canadian definition for research purposes, that can allow for tracking of different phases and severity of illness, seems good to me as a starting point.


* Interaction and collaboration with biomedical clinicians and researchers.


* Greater transparency about their current and planned actions. If they could give a worthwhile report at CFSAC meetings, and interact regularly and productively with respected researchers, I don't necessarily need them to have additional forums.


* Research appropriate to an appropriate definition, and with a better focus to accomplish something. Without an appropriate definition and cohort selection, I think "no research" by the CDC would be an improvement.


And-
Possibly, the website, as an example of a problem they need to fix.
Possibly, the name - it should be a natural outgrowth of discussion about the concerns with definition and research.


Thanks for seeking input.
 

WillowJ

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Lumping ideas:

1. Accept our invitation to open dialogue through quarterly meetings with patient organization representatives to discuss CDC policies in ME/CFS research.

2. Establish monthly conference calls with a panel of other ME/CFS researchers, such as those who are members of the International Association for CFS/ME, for the purpose of creating collaborations.

3. Change the diagnostic criteria for ME/CFS so they more accurately reflect the NeuroEndocrineImmune disorder discovered in the Incline Village and Lyndonville outbreaks. Study that illness. Use the Canadian Concensus Criteria.

4. For cohorts, use patients from well-known physicians who specialize in caring for ME/CFS patients and have done so for decades. As research history shows, finding the common denominator of an emerging illness requires the cohort criteria be narrow.

5. Use your influence and resources to support the Chronic Fatigue Syndrome Advisory Committee recommendation that the federal government establish and coordinate a network of specialized care / research enters.

6. Change the name of the illness to one that reflects the serious and debilitating reality that many patients experience. Correcting the misconceptions caused by the trivializing name, "chronic fatigue syndrome," rests with the CDC.

7. Establish a proactive physician education program through seminars and curriculum in medical schools, showing the biological findings in the majority of patients with this illness.

8. Request that Congress allocate more research funding for ME/CFS to bring it in line with funding levels of other disabling diseases.

9. Abandon the psychological research (such as the childhood trauma study) and, instead, study the possible connections to infections in ME/CFS. This is certainly much more appropriate for your branch, the Chronic Viral Diseases Branch.
Under 3, combine 4, 6, and 9.

Combine 5 and 8.

Combine 1 and 2.

Add the ICD-10-CM problem.

That leaves only 5 issues (summarized below):

I) Definition (3, 4, 6, 9): Change to use of an appropriate definition with a serious name, which will result in a narrow cohort criteria, and use that to study serious biomedical issues; no more psychogenic type research. Preferably, retract all studies published with Empiric criteria (or at least change the title and internal labels to "fatigue" rather than "CFS" and "chronic fatigue syndrome") and other badly-conceived, badly-designed CDC studies.

II) ICD-10-CM (new): it should not have two separate listings for CFS (which is actually contrary to WHO guidelines as well as being really bad for us); the listing under vague and ill-defined symptoms of CFS, not otherwise classified, should be stricken from the classification; only the listing under neurological diseases (with ME and PVFS) should be used. Even with a new case definition (including adoption of CCC) and new name, this will require correction because it can be assumed that it will take time both to adopt the changes and that it will take time to disseminate this information among physicians.

III) outreach (1 and 2): regularly dialog with ME/CFS community and the biomedical research and clinical physicians. Actually implement recommendations.

IV) Physician education (7): Establish a proactive physician education program through seminars and curriculum in medical schools, showing the biological findings in patients with this illness. Carefully sort research studies for correct use of Fukuda, Holmes, Canadian, Ramsay, or similar. Teach that studies using Oxford, or Fukuda when pre-screened for patients with no neurological or immune signs, symptoms, or lab findings, denote chronic fatigue and not ME/CFS. Teach that studies using Fukuda or Holmes still do not select for ME/CFS and will not contain 100% ME/CFS patients.

V) Funding (8 and 5): Request more funding for research consistent with other poorly-understood debilitating diseases such as Alzheimer's disease (offer grants if they don't know what to do with it themselves); hire molecular biologists, immunologists, virologists, retrovirologists, neurologists (the sort that work with myasthenia gravis, multiple sclerosis, epilepsy, migraine with aura, and Alzheimer's patients), cardiologists, and endocrinologists (the sort that work with Hashimoto's Thyroiditis), as well as a pulmonologist, an oncologist, and a rheumatologist or two, to work on studying the Disease (send the psychs off the team, send James Jones off the team); support establishment of specialized care / research centers.

The first three things are things that CDC is best positioned to do and should, itself, do.

The last two things are things that need doing very badly but would be better done by Dr. Mangan, unless Dr. Unger actually does I-III with good will and does the personnel change in V (and is allowed to do all this by her bosses).

I second what Anika and Dolphin said.

Thanks so much for seeking input. :)
 

justinreilly

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Thanks PANDORA for soliciting direct patient input!! This is key and makes me a supporter.

Is there a way to make sure it is one person, one vote. I am not worried about pwME voting more than once. But given CDC's long history of criminality in this area, I am concerned that they will attempt to fill out the survey many times and 'vote' down the most important points.

I would add to the top three priorities: that CDC, which is responsible for ICD 10 CM, revise its draft to eliminate "CFS" which is currently listed under "chronic fatigue, NOS" and (or failing that, put it in with ME in the neuro section).
 

taniaaust1

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The thought of the CDC doing physician education really bothers me.. they need to clear up the other stuff first and show they are serious about CFS/ME before we want them to go and educate others on their way of thinking. This may not be the right time to have them doing that.
 

Megan

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4. For cohorts, use patients from well-known physicians who specialize in caring for ME/CFS patients and have done so for decades. As research history shows, finding the common denominator of an emerging illness requires the cohort criteria be narrow.
I feel that for research purposes number four is still very important. It does't matter how good your definition is, if it's poorly applied the science will still be meaningless. I have heard some really bad examples of doctors not using anywhere near proper diagnostic criteria - essentially applying a CFS or FMS label to someone with unexplained fatigue or pain they just want to get out of their office. I expect there is also an element of patient self selection going on with the more well known CFS doctors attracting the more severely ill and protracted cases.

Overall, I am impressed by the letter sent by PANDORA but am not comfortable with the suggestion of separate treatment centres. This could be to our detriment as a broader strategy if it finished up sidelining us from mainstream treatment/research centres. As a patient I want treatment that works, I don't care where its delivered from. As far as I know, HIV patients are treated in the infectious diseases departments of our major hospitals. We also have existing mainstream research facilities with our best scientists and doctors in them - why not fight for appropriate access to those?
 

asleep

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This is a very problematic survey (assuming, perhaps boldly, that its actual intention is gauge patient interests):

  1. There is no mention of XMRV or HGRV at all. To many people, this is far far and away the most important issue.
  2. One cannot even comment on XMRV through the survey without first agreeing that every single other pre-determined goal is some variation of important.

As such, this is a survey designed to garner the appearance of patient support for a pre-determined agenda. The fact that this pre-determined agenda does not include XMRV is highly troubling.

As the survey stands, it cannot possibly represent my interests. For how many others is this true? I suspect a great many.
 
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The points are excellent, but the most important point is funding. It always needs to be #1. The CDC recently published a paper which claimed national costs of $51 billion, PA. Although the methodology wasn't great. Dr Jason's (better) paper has costs nearing $25 billion per year. Why then do they spend so little on CFS/ME research?
 

Tammie

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Personally I would be worried about a lot of CDC doctor education at this time especially after I heard from a patient advocate that James Jones is in charge of education.
I don't think that they mean the CDC doing the educating of the Drs....if they do I agree that I do not want that at all.....I do think that if they are actually using the Candian definition in that education, though, instead of the b/s that gets used now, then Drs are going to understand a lot more about ME/CFS, though, regardless of who is doing the educating
 

Dolphin

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I don't think that they mean the CDC doing the educating of the Drs....if they do I agree that I do not want that at all.....I do think that if they are actually using the Candian definition in that education, though, instead of the b/s that gets used now, then Drs are going to understand a lot more about ME/CFS, though, regardless of who is doing the educating
The problem is that what people ask for isn't always a perfect match to what they get and claims can still end up being made that this was asked for.
 

Dolphin

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The points are excellent, but the most important point is funding. It always needs to be #1. The CDC recently published a paper which claimed national costs of $51 billion, PA. Although the methodology wasn't great. Dr Jason's (better) paper has costs nearing $25 billion per year. Why then do they spend so little on CFS/ME research?
True, but it could be argued that the CDC are allocated a budget for CFS - this is more about how it is spent.
 

SOC

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After letting this sit in the back of my mind for several days, I'm coming to the conclusion that the thing that we can emphasize --
that is within their mandate,
that they can (relatively) easily and quickly accomplish,
that doesn't require massive amounts of funding,
AND that we can monitor with little difficulty,
is NAME CHANGE.

Name change would contribute to:
1) a part of our problem with doctor (mis)education,
2) better access to research funding,
3) better public perception/quality of life improvements
4) easy access to disability services