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News from NIH: ME/CFS Webinar - October 17, 2019
There was no update on the NIH clinical study.
(The stated purpose of this call was to give an overview of the NANDS report on ME.)
The call in August gave a brief update on the intramural study https://www.nih.gov/research-traini...mecfs/nih-me/cfs-advocacy-call-august-19-2019
Dolphin
Senior Member (Voting Rights)
They have been calling for help with recruitment for patients and healthy controls which is a free thing people can do to help the process e.g. highlight on social media.
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From my very sparse notes - in Sept, the Trans-NIH ME/cfs Working Group reviewed the report and categorized the recommendations (things in progress, short-term, long-term).
Some "in progress" items include:
encourage research topics,
general outreach (though the way they talked about that sounded to me as though their current actions are solely responses to requests for info rather than a concerted effort to spread the word/educate),
outreach to scientific endeavours such as InvestInME and other conferences - material on ME will be prepared to provide for NINDS to display at conference exhibits,
partnering with SolveME re its registry and with Columbia about its research app,
implementing GUIDS (to ensure that studies aren't always tapping the same cohort).
Short-term:
set up an inter-agency working group
coordinate research on overlapping conditions.
Re strategic planning
identify gaps,
strengthen ongoing activities,
develop a process for generating a strategic plan (this makes it sound as though the development of the plan is not happening soon --- surprised?)....
The link to the transcript and webcast should be posted here
https://www.nih.gov/mecfs/events
probably by end of Oct 2019.
It felt as though they were going to develop a plan, to develop a plan, for developing the plan, to make a plan, to generate a plan that may end up working on a strategic plan. (Either that or I was not hearing that they feel a sense of urgency....)
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rvallee
Senior Member (Voting Rights)
Tom Kindlon
Senior Member (Voting Rights)
To facilitate sharing:
Simon M
Senior Member (Voting Rights)
Read the transcript: mostly the NINDS council report implementation seems to me to be based on a lot of good things, but none of them is game-changing.
Even so, a few things that came up caught my eye:
1. Funding, including possible set-aside funding
2. A new biobank of mecfs samples, available to all
3. Autoimmune diseases and chronic infection can be behind even well-diagnosed mecfs.
1. Set-aside funding?
Claudia Carrera question
Vicky Whittemore["not set-aside but special review, happening asap"]
There was some discussion of set-aside again later, but nothing that gave me much hope.
2. NIH Biobanking and Solve patient registry
Biobanks help draw new researchers into the field and can standardise samples.
Dr Steve Roberds
Vicky Whittemore
US Brain biobank
VW
Patient registry
VW
3. Autoimmune diseases and chronic infection can be behind even well-diagnosed mecfs.
Actually, I thought the most interesting comment in the whole call was this, from Walter Koroshetz. He said that it appears that the NIh intramural study (with it's best-in-world diagnostic capacity) has found autoimmune disease and chronic infection in people who otherwise appear to definitely have mecfs:
Even so, a few things that came up caught my eye:
1. Funding, including possible set-aside funding
2. A new biobank of mecfs samples, available to all
3. Autoimmune diseases and chronic infection can be behind even well-diagnosed mecfs.
1. Set-aside funding?
Claudia Carrera question
Vicky Whittemore["not set-aside but special review, happening asap"]
There was some discussion of set-aside again later, but nothing that gave me much hope.
2. NIH Biobanking and Solve patient registry
Biobanks help draw new researchers into the field and can standardise samples.
Dr Steve Roberds
Vicky Whittemore
Correction: the section in bold, a comment in square brackets added by me, originally said [run by Ian Lipkin] but I want to make clear that Mady Hornig was the PI for the CFI-funded projects at Columbia, including collecting the samples. Credit where credit is due. My apologies to Mady for this omission.
US Brain biobank
VW
Patient registry
VW
3. Autoimmune diseases and chronic infection can be behind even well-diagnosed mecfs.
Actually, I thought the most interesting comment in the whole call was this, from Walter Koroshetz. He said that it appears that the NIh intramural study (with it's best-in-world diagnostic capacity) has found autoimmune disease and chronic infection in people who otherwise appear to definitely have mecfs:
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lunarainbows
Senior Member (Voting Rights)
did he expand on what autoimmune diseases and especially what chronic infections they had found?
It would be useful to know as outside of the NIH I doubt many of us are getting tested for these things.
rvallee
Senior Member (Voting Rights)
Mass misdiagnosis was specifically warned about when the BPS shift happened. It did not take more than a minimal effort to understand that it would be an inevitable consequence. We even know it happens both ways and it would not be particularly surprising if double-digit % of those diagnosed with ME actually have an alternative explanation, maybe more than one subset.
Can that lead to some action? Hate pwME or not, those other diseases are definitely clear iatrogenic harm when they are missed because of discrimination directed against pwME, predictable and predicted. All the things mentioned are good, but they need to happen at 100x the scale and 100x the urgency.
Every step forward validates that the denial has to stop and work has to begin in earnest. So what's the hold? Liability? Is that it? Just unable to move forward because of the can of worms it will open up? It will happen anyway, refusing to act now only compounds on that failure, might as well rip the band-aid and deal with the consequences.
Hoopoe
Senior Member (Voting Rights)
If I remember right, these patients were "well diagnosed" by ME experts.
rvallee
Senior Member (Voting Rights)
Doubtful that ME experts would be knowledgeable enough in all those other conditions yet. At least not without much more significant clinical expertise and data are built, with the noise brought down to a minimum and the field instead focused on the real issues that affect ME patients. If it happens with specialists, imagine what else slips through on the BPS side and in the whole of clinical practice. I'm actually curious who in the latter two would do better. I wouldn't bet with any certainty.
But my point was generally about the broader population, how many diagnosed with ME have a condition that medicine can treat or at least provide basic support for. If a sample of carefully vetted patients has a significant %, it's likely even higher in the entire ME population.
That's horrible. It means we know there are people that medicine can significantly help but are denied that help because of mass confusion about how to handle complex illness that we can't yet reliably diagnose. I don't understand how it's ethical to continue this practice. I certainly strongly object to it and if it meant anything I would complain about it but nobody in a position to make a difference seems to care yet.
Simon M
Senior Member (Voting Rights)
I think Koroshetz is referring to something rather different. The key point is that here are people who meet the criteria for me/cfs, appear to have me/cfs, but deep exclusionary diagnosis during a week-long in-patient admission at what is probably the best diagnostic facility in the world (the NIH clinical centre at Bethedsa) showed that they have other disorders that present as mecfs. I think Koroshetz was implying we might be able to learn from this e.g do they have some shared pathophysiology with mecfs ?
This is different from missing clear alternative diagnoses, of which there are a broad range, including thyroid issues, depression, cancer, rheumatoid arthritis, hepatitis C and anaemia (I assume that you are referring to Simon Wessely's exhortation not to waste much time on looking for alternative causes of fatigue).
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