CFSAC recommendations following August 2015 meeting

[Dolphin]

I see these were posted elsewhere (item #272 in a thread). I thought I'd give them their own thread so they don't get missed:

Title: Recommendations From the HHS Chronic Fatigue Syndrome Advisory Committee Following Publication of:Institute of Medicine of the National Academies Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome:
Redefining an Illness
Source: U.S. Department of Health and Human Services
Date: September 11, 2015
URL:
http://www.hhs.gov/advcomcfs/recommendations/2015-08-18-19-recommendations.pdf

Source: U.S. Department of Health and Human Services
Date: September 11, 2015
URL:
http://www.hhs.gov/advcomcfs/recommendations/2015-08-18-19-patient-registry-recommendations.html

Patient Registry and Data Sharing Platform Working Group
August 18-19, 2015 Recommendations

Source: U.S. Department of Health and Human Services
Date: September 11, 2015
URL:
http://www.hhs.gov/advcomcfs/recomm...19-questions-and-answers-recommendations.html

Questions and Answers from August 18-19, 2015 CFSAC Meeting

 

[A.B.]

The first document is pretty good. I got slightly emotional while reading it. It looks like a serious and sincere effort to improve the situation for patients. Some fairly specific recommendations on how to organize research are made. I can't really judge these but being more specific than asking for "more research" seems like a good thing. The majority of the recommendations should be uncontroversial, however, they do recommend the SEID criteria to be used in clinical practice (with CCC for research).

 

[Sean]

1. PRIORITIZE DEVELOPMENT OF BIOMARKERS AND OBJECTIVE DIAGNOSTIC TESTS: CFSAC recommends that targeted Requests for Applications (RFAs), which clearly prioritize the identification and validation of distinct biomarkers and objective diagnostic tests and give preference to collaborative network initiatives, be issued as soon as possible. RFAs should advance the study of... 2-day cardiopulmonary function/recovery with gas exchange;

 

[Sean]

page 8

The NINDS [National Institute of Neurological Disorders and Stroke] supports research for diseases which present similarly to ME/CFS and may be important controls for research (e.g. multiple sclerosis, systemic lupus, neurological sequelae in Lyme disease).

Good point.

 

[Sean]

Based on disease prevalence, equitable funding is estimated to be $250,000,000 per year.

Damn good start. I approve.

Based on the findings of the IOM and NIH P2P, the disparity of federal resources, and the huge economic burden of ME/CFS, funding that is commensurate with economic burden is well- justified to reverse the decades long trend of misunderstanding and inappropriate treatment of patients and reduce the overall economic burden imposed on individuals and society.

Nailed it.

 

[Never Give Up]

Damn good start. I approve.


Nailed it.

Haven't read it all yet, but this is fabulous! $250,000,000!

 

[Snow Leopard]

Asking for $250 million sounds nice, but on the other side of the coin, they will be wondering what it would be spent on.

I think we need to be more explicit and say that we need the NIH to take leadership, to create specialist research centres, to build research capacity so that there are researchers applying for grants for high quality research.

Right now we are stuck in a catch-22, not much interest and most research grants are knocked back or not applied for in the first place, considered to be too speculative.

 

[Sean]

Ah, Snow Leopard, give me 24 hours of dreaming. I've earned it.

 

[Denise]

Thanks @Dolphin for creating the thread.

 

[Sean]

I think we need to be more explicit and say that we need the NIH to take leadership, to create specialist research centres, to build research capacity so that there are researchers applying for grants for high quality research.

Right now we are stuck in a catch-22, not much interest and most research grants are knocked back or not applied for in the first place, considered to be too speculative.

I take your point that it is not as simple as just switching on the money flow, and that great care needs to be taken to make sure the money is well spent, especially in this field with it shitty history of dodgy research.

 

[halcyon]

I thought the recommendations were pretty decent. I'm happy to see they didn't agree with creating a new ICD code and recommended G93.3 until there is a good reason not to. It's unfortunate that they couldn't come to a consensus on the name, but recommending G93.3 is about as close as you can get to recommending calling it ME without actually doing so.

My favorite part?

Clarification that counseling therapies are not treatments but may be helpful coping mechanisms; Declaration that the disease is not the result of fear-based avoidance of activity and that cognitive behavioral therapy (CBT) and graded exercise therapy (GET) for this purpose are inappropriate; Clear warning about the potential harms of graded exercise therapy and a statement that exercise therapy of any kind should only be considered if and when appropriately trained professionals are involved and measures are taken to ensure that the exercise does not induce post-exertional malaise or cause other physical harm. Further, treatment recommendations and clinical findings based on Oxford or Reeves definitions should no longer be applied to these patients.

Buhbye PACE trial.

 

[SOC]

Buhbye PACE trial.

If only.... Sigh...

 

[halcyon]

If only.... Sigh...

I know, I know. These are just CFSAC recommendations which historically end up in the HHS circular file. I'm slightly more positive about these recommendations though because they are piggybacked on 3 federally funded reports. Perhaps these can't be so easily ignored.

 

[SOC]

I know, I know. These are just CFSAC recommendations which historically end up in the HHS circular file. I'm slightly more positive about these recommendations though because they are piggybacked on 3 federally funded reports. Perhaps these can't be so easily ignored.

I agree. I just don't think the UK authorities are going to give up on PACE that easily based on a US document. Quite a bit of jingoism going on over there.

 

[halcyon]

I agree. I just don't think the UK authorities are going to give up on PACE that easily based on a US document. Quite a bit of jingoism going on over there.

Oh of course. I meant mostly in the US, but if we discredit it here that's a start.