USA:NANDSC Working Group for ME/CFS Research report, September 2019

From: NIH MECFS Information List
Sent: Wednesday 4 September 2019 15:36

Subject: News from NIH: Report of the NANDSC Working Group for ME/CFS
Research now online



The report of the NANDSC Working Group for ME/CFS Research is now
online: https://www.ninds.nih.gov/sites/def...cil_working_group_for_mecfs_research_508c.pdf.
The Working Group will present its report at the meeting of the
National Advisory Neurological Disorders and Stroke Council at
approximately 1:20pm ET this afternoon. To watch the presentation,
please visit: http://videocast.nih.gov/ To learn more about the NANDS
Council Working Group, go to:
https://www.ninds.nih.gov/About-NINDS/Who-We-Are/Advisory-Council/ME-CFS-Working-Group



Regards,

The Trans-NIH ME/CFS Working Group

 

To facilitate sharing:
https://twitter.com/user/status/1169273284048936960

https://twitter.com/user/status/1169290223097974784

 

Sigh

 

Yeah, okay. Let's not look at this as individual condition, AND let's broaden the criteria.

 

And who created the stigma?

 

Thank heavens it was approved... Way too much emphasis on fatigue yet again.. Walter's comment on the marathon runner actually made me break into a sweat.. Obviously still NO idea what ME is!!! Jeez.

 

Still no increase in funding? Actually the funding is decreasing? OK then. Thanks for nothing. By the year 2150 someone will agree to a plan of sorts, maybe.

Clearly the NIH is stuck at step 1. Which is better than step -1, so at least we got that going for us, standing still is certainly better than the usual aggressive regress. If anyone gets a retro feel it's because we can party like it's the late 80's, as this might as well come from. Still better than overt sabotage, I guess.

There will be absolutely no recognition of this half-assed non-effort unless it significantly ramps up. If, and this is likely, fully private efforts end up being responsible for a breakthrough, all that will be remembered of the NIH, like every other health research institution in the world, is that they have done nothing whatsoever of value and will not even get the mediocre recognition of a participation trophy. Just a tiny smidge above the rest.

Sometimes you can say "at least they tried". Not here. 0/10. F you too, I guess.

 

I got the same feeling heard it before same with politicians they say the right things and then do precisely nothing or worse they proactively change things to make them worse as in the not fit for purpose English benefit system .

 

I liked the presenter Steven Roberds.. Hopefully he will stay working with us..and actually care enough to push things along.

 

The link to the recorded video is the same as the live videocast link that was listed in a post made by @Tom Kindlon above.

But I thought I'd repost it here -

https://videocast.nih.gov/summary.asp?Live=33390&bhcp=1

The ME/CFS part starts at about minute 56.

I'm going to watch it now. I'm not up to doing a full transcript but I will take a few screen shots.

[edited for typos]

 

This link is to the caption file (in all caps, accuracy of capture likely to be questionable). There are no breaks in the captions so I can't tell you when the ME report begins....
https://videocast.nih.gov/vodCaptions/ninds090419.txt

 

I’ve just managed to read the report. I tend to agree with others that it makes sensible recommendations but that it has few concrete commitments, in particular when it comes to funding.

Commitment but no funding

What I hoped for is that the NIH would say that they want to see the ME/CFS field grow with a certain percentage per year and that they are committed to this, for example by issuing new RFA’s if necessary. Such a commitment would provide some insurance and stability for new researchers to enter the field.

Based on this report, it seems that the NIH is committed to further ME/CFS research in all sorts of ways except for a large or steady increase in funding. I suppose the way they see it is that the ME/CFS research community needs to strengthen first and that funding will then follow, instead of the other way around.

Some reasonable proposals

Nonetheless, there are several suggestions in the report that seem reasonable and helpful. Here’s a brief overview of what caught my mind:

• NIH should solicit ME/CFS proposals through targeted outreach to investigators in relevant scientific and medical fields identified by the Trans-NIH ME/CFS Working Group to be relevant to ME/CFS, regardless of whether those investigators have previously studied ME/CFS
• NIH should inform ME/CFS investigators when relevant NIH Funding Opportunity Announcements are available in related fields and conditions (such as chronic pain, etc.).
• NIH should continue to hold ME/CFS conferences on a regular basis […] NIH should continue to issue press releases when significant NIH-funded ME/CFS research is published.
• NIH should offer information and feedback to stakeholders who are engaged in outreach and medical education. [...] When appropriate for its mission, NIH should partner with other federal agencies, such as CDC, and professional organizations to disseminate information about research on ME/CFS.
  
• NIH should encourage funded research projects to provide biospecimens to existing biobanks for sharing with qualified investigators.
• NIH should partner with stakeholders to develop a registry through which potential study participants can be identified.
• When scientifically appropriate, NIH should encourage investigators to include disease comparison groups with other fatiguing illnesses (e.g., multiple sclerosis, systemic lupus erythematosus, major depression, Sjogren’s syndrome) as well as healthy control subjects.
• NIH should encourage applications proposing to use one particular case definition to also obtain sufficient clinical data so that the subjects can be categorized according to any of the primary case definitions of ME/CFS.
• NIH should encourage the use of telemedicine or home visits for research on home- or bed-bound people with ME/CFS to include this group of individuals in research studies when feasible. […] NIH should encourage the use of validated wearable devices and/or apps for symptom tracking of individuals with ME/CFS outside the research lab/clinic setting.

Problems with the psychosomatic view

There is also a strong statement in the report which reads that “A history of claims of psychosomatic origins continues to perpetuate a reputation that the disease lacks a biologic etiology and/or is difficult to study, which also creates barriers to publication of ME/CFS research in high quality journals.” Not so sure of the latter (it could also be that biomedical ME/CFS research simply hasn’t been of high quality thus far) but it seems significant that NANDS is willing to state this, given how popular psychosomatic theories still are in Europe.

ME/CFS as a multi-system disease that needs multidisciplinary research

Then there were also some points that I find frustrating or puzzling. One example is the frequent referral to ME/CFS as a multi-system disease. I remember others on the forum discuss this problem before in regards to the 2015 NAM-report, but at the time I didn’t really see the importance or the impact this could have. In this NANDS report, however, one of the recommendations is that the “NIH should continue to encourage multidisciplinary approaches in grant proposals.”

So ‘multi-system disease’ is not only a description, it is also related to a particular approach to research. Some seem convinced that ME/CFS research requires a multidisciplinary approach to be successful. The report reads: “ME/CFS research is often conducted in silos, but an integrated, multidisciplinary research approach is needed for such a complex, multi-system disease.” To me that assumption seems unfounded.

As far as I’m aware there are few abnormalities that have been demonstrated in large samples and replicated by multiple research teams. In fact, I suspect there are practically none of great significance thus far. Yet the NANDS report writes: “Over the past 35 years, many studies have found abnormalities in the central and autonomic nervous systems, chronic immune activation or exhaustion, and abnormalities of energy metabolism, in people with ME/CFS.” So I suspect that the term multi-system disease is based on research findings that aren’t robust and that such presumptions are not helpful in planning how to further the field. It’s of course always helpful if researchers are part of a larger team, but I don’t see why one should push for grant proposals to be multidisciplinary.

The need for subgrouping

Another point that I didn’t quite understand is the advice that the “NIH should encourage research to identify and validate ME/CFS subtypes.” The reasoning is that “ME/CFS is likely a heterogenous condition” and that therefore researchers should try to make subgroups. But on what basis should those subgroups be made? The whole problem is that we aren’t able to make those subgroups because we haven’t found anything that is robust and significant enough to do so. In my view, making subgroups is the goal rather than the strategy, because we will only be able to do it in a reasonable way when there is some sort of breakthrough. If researchers start making subgroups without that, it might further muddle the field and make it harder to replicate findings.

An animal or in vitro model

There is also the suggestion that the NIH should encourage the development of an animal- or in vitro model of ME/CFS, which seems rather unrealistic to me given how little we know about the pathology of ME/CFS. This is most likely to end up with researchers pushing research animals to extreme exhaustion and then claiming it’s a model for ME/CFS. Perhaps it could be interesting to study extreme exhaustion that way but thinking it’s a proxy for ME/CFS is more likely to be misleading than helpful in my opinion.

 

I have a few comments after watching the video.

The ME/CFS presentation starts at about minute 56. The talk ends at about 1:24, followed by a question/answer period until about 1:41.

The intro slides (see screen shots in the next post) seemed pretty good.

The only objection I had about the information presented (other than the usual frustration -- why was this type of strategic approach not started by the NIH 20 years ago?) was perhaps not enough emphasis on PEM or post-exertional symptoms when describing the illness.

For example, the presenter said this (in all CAPS since I cut/pasted from closed-caption file):

"SO YOU MIGHT REMEMBER THAT ONE OF THE FEATURES OF THE DISEASE IS THAT PEOPLE ARE OFTEN FATIGUED AFTER SOME SORT OF PHYSICAL OR MENTAL EXERTION."

I was surprised by the word "often." To me, that makes it sound like it's an optional part of the diagnostic criteria. And there's that word "fatigued" again, instead of the long list of symptoms that most patients use to describe the sick/exhausted state of PEM.

But maybe I'm being too picky. Other than that, I think it was not a bad presentation.

I hope that this process actually creates a strategy for the NIH that leads to more funding, more research, more answers, and some actual results. But I just can't tell whether this is all words or it will actually lead to actions that make a difference.

 

Some screen shots from the video (not the whole thing).



I think these are in order. (crosses fingers)

 

I forgot to mention one thing. From the last slide of the presentation:

* Dr. Roberds will participate in the next NIH ME/CFS Advocacy call on October 17th to further discuss this report



I generally don't participate in any of these live calls or presentations (just too hard for me to follow) but I thought I'd pass this on for those who do.

 

Cort’s report
https://www.healthrising.org/blog/2019/09/08/pivotal-moment-chronic-fatigue-syndrome-me-cfs/

It all looks encouraging. It is pretty bizarre that we have got to 2019 before the USA has a decision on the need for a strategy for this languishing major health problem ?!
Soliciting research proposals through targeted outreach seems a very good idea in a stigmatized, misunderstood field as one measure to over come the disinterest. There’s material in USA to educate sufficiently when needed. I’m glad there as reference to including the severely affected too.
Hopefully substantial funding will follow.
Thanks to @Solve ME/CFS who were big players it seems.

I would like to see similar calls/actions in uk. I was just looking up about the autism act of 2009 & the autism strategy of 2014 in UK which compelled government to take autism, which affects 1 in a 100, seriously, devise a strategy, commit to regularly reviewing the situation, provide stats on autism numbers, care etc (from memory) and I think compel regions to provide services and training etc. It came about through lobbying and work of their APPG. I think that we need an inquiry & strategy, or rather have needed a strategy, both care & research, since 2002.

 

From an email sent out by Solve.

This bit though..

 

Be careful what you wish for. We were promised a full, independent, high level inquiry by Dr Ian Gibson back in 2005. What we got was the inadequate, unofficial, toothless, flawed, damaging and hastily cobbled together "Gibson Report" (2006) [1], which pretty much sunk without trace and without influence; and we no longer even have an APPG on ME.


1 Group on Scientific Research into Myalgic Encephalomyelitis (ME)
http://www.erythos.com/gibsonenquiry/Index.html
Final Report, November 2006
http://www.erythos.com/gibsonenquiry/Report.html

2 Commentary by Angela Kennedy
https://twentysixsoldiersoflead.wor...ughts-on-the-gibson-report-by-angela-kennedy/
More thoughts on the Gibson Report by Angela Kennedy
Posted August 28, 2009