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NIH publishes responses to RFI (Request for Information) on ME/CFS

Sasha

Fine, thank you
Messages
17,863
Location
UK
Just got this email:

NIH said:
As you know, the NIH posted an open invitation in the form of a Request for Informationso that researchers, healthcare providers, patient advocates and health advocacy organizations, scientific and professional organizations, and all others could provide their thoughts about research strategies for ME/CFS.

We received many thoughtful comments and ideas. The comments are now posted online at https://www.nih.gov/research-traini...ih-requested-comments-me/cfs-research-effortsfor all to see.

Please note that certain information has been removed (e.g., all emails as well as names and personal information that could be used to identify patients). Names of healthcare providers, researchers and representatives from patient organizations remain.

Over the next few months, the Trans-NIH ME/CFS Working Group will review all of the responses and these comments to help guide research strategies and initiatives to advance our knowledge of ME/CFS and eventually find a treatment for this devastating disease. Once the responses are reviewed, the Working Group will prepare a summary that will be posted online (www.nih.gov/mecfs).

Please check the NIH ME/CFS website (www.nih.gov/mecfs) for this information as well as updates of other ME/CFS research activities at the NIH.

Sincerely,
Marian Emr

Director, Office of Communications and Public Liaison
National Institute of Neurlogical Disorders and Stroke/NIH
On behalf of the Trans-NIH ME/CFS Working Group

Just reading #MEAction's report - well done, @JaimeS! :balloons:
 

Mary

Moderator Resource
Messages
17,293
Location
Southern California
I'm impressed the NIH bothered to post patient input. I've just looked briefly at the patient comments/requests - they are overwhelmingly articulate, thoughtful, knowledgeable, etc. etc. etc. - well done all who submitted, and kudos to the NIH for making it available to all! :thumbsup: It's starting to feel like we're being heard .. maybe ...
 

Kati

Patient in training
Messages
5,497
LDN has a large amount of support.

I noticed many posts about LDN, as if a full LDN group had been briefed about writing comments to the NIH specifically asking for LDN studies.

So maybe their campaign was successful in recruiting commentators.
 

A.B.

Senior Member
Messages
3,780
I noticed many posts about LDN, as if a full LDN group had been briefed about writing comments to the NIH specifically asking for LDN studies.

So maybe their campaign was successful in recruiting commentators.

Yes. The LDN related posts don't always seem to be related to ME/CFS but more chronic pain and opiod problems. I think you are right.

I'm about 1/3 through the patient comments (probably won't finish) and most comments are good. There are unfortunately also some that are of little value. The overall impression is that the patient community largely agrees on about a dozen research priorities and barriers to research.
 
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Kati

Patient in training
Messages
5,497
The patient comment starting at bottom of p 126 is quite insightful of the immense suffering and of the current state of affair in medicine and government administration when it comes to ME. 'Cookbook medicine' is truly what it is.

Whoever you are, thank you for writing this.
 

A.B.

Senior Member
Messages
3,780
Since I skimmed all the patient comments, I don't deserve the Bob prize for such sloppy work, but here are my impressions:

Most comments are recommendations for research, some of them are very long and detailed. I would say that after the obvious recommendation to increase funding, the most popular recommendation is to prioritize development of diagnostic tests and research into biomarkers. Other popular recommendations (in no particular order) include doctor education, creation of centers of excellence, natural history of the disease, severely ill patients in their homes, immune system, microbiome, various stress tests (CPET, etc.) and PEM, brain imaging, metabolomics, agreeing on a (stricter) case definition, urgent need for treatment.

A surprisingly, to me, number of comments speak positively about LDN and Ampligen and ask for clinical trials. Some LDN related comments might be from LDN users with other health problems. Rituximab trials have less support but are also requested.

Some comments are from patients describing their story. How it started, what symptoms they have, their suffering.

A few comments promote their own hypothesis.

The ongoing infection hypothesis is still popular, in paticular enteroviruses. This might be a US thing.

The heterogeneity of ME/CFS is reflected in how patients describe their illness. There is generally awareness that subgroups exist and that this is a problem that must be dealt with in order to move research forward.

Nobody expressed support for a psychosomatic explanation. Several comments are critical of psychiatry and PACE.

A common sentiment expressed is that of neglect, urgent need for treatment, poor attitudes from the health care system.

Overall this seems good. Patients have somewhat different priorities than the researchers but there is a large overlap in how they view the illness. NIH can't say they didn't get good feedback :)
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Does it count if I skimmed all of the pages?
Yes, that definitely deserves a prize! :balloons::star::trophy::star::balloons:

We'll have to dust down "The Bob".

Since I skimmed all the patient comments, I don't deserve the Bob prize for such sloppy work
I disagree. That definitely deserves a prize. :balloons::star::trophy::star::balloons:

But now I'm not sure whether Denise or A.B. should get the main prize: "The Bob"? How do we decide?

BTW, "The Bob" is notoriously pretty useless and needs lots of attention, feeding and looking after!