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

[Valentijn]

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

There's more than enough Bob to go around

 

[Denise]

LDN has a large amount of support.

I too was struck by the number of LDN comments.
I think it can be traced to and email sent out by The LDN Research Trust .
On Living with ME/CFS Sue Jackson (the blogger) posted about receiving an email from The LDN Research Trust that said:

"The National Institute of Health in the USA which is the body that grants funds for public research into ME/CFS has put out a "Request for Information: Soliciting Input for New Research Strategies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)"

They are asking for ideas from individuals as well as bigger groups. The response date is by 24th June so we need to act quickly!

The request can be found at this NIH link.

If you have any experience of LDN for ME/CFS as a user or prescriber please send an email to MECFSRFI@mail.nih.govMECFSRFI@mail.nih.gov Your input would be invaluable."​

fwiw - I know several people for whom LDN has been beneficial and I know at least as many who have had no benefit from it. It likely depends on patient selection and all that ya know.

 

[Denise]

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. ........

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

Thank you for posting your impressions.
Since you posted yours first, I believe The Bob should be yours. Perhaps my role should be the care and feeding of The Bob.

 

[Denise]

The patient/advocate/org input was generally quite thoughtful.
I was glad that a number of researchers/clinicians took the time to provide input.

As @A.B. noted "NIH can't say they didn't get good feedback"

It will be interesting to see the summary by NIH and interesting to see where they go from here.

 

[Esther12]

Good to hear PACE was getting a bit of a bashing.

 

[Comet]

Was only able to skim a bit last night, so thanks for that summary @A.B. This is amazing stuff. I feel as though history is being made... finally.

Now the nail biting wait to see what the NIH makes of it all, and how long it takes.

As for the , I see nothing wrong with twin Bobs, or a Bob-brella - which could cover the efforts of many.

 

[Justin30]

I have not read through this but hope the neurological coponent of the disease was addressed like many that suffer in doors in dark rooms.

I was hoping to write but have been in eough shape.

I hope that IVIG, plasmapherisis, autoantibodies, enecephalopathy, biomarkers, subsetting and others was addressed.

The severe group needs to looked at closely as these are the most gravely impacted and seem to suffer for decades along with their loved ones.

I saw lots about LDN in posts but that being said it needs to be tried on the severe neuro group as we know it can help mild cases a lot.

Wish I could have wrote to NIH but was just to ill during that time...

Hope they fast track whatever is going on.

And really hope they focus on brain stuff as this seems to be a huge problem for many...

 

[Bob]

I hope that IVIG, plasmapherisis, autoantibodies, enecephalopathy, biomarkers, subsetting and others was addressed.

I've only lightly skimmed a small section of the patient submissions so far. Autoantibodies, biomarkers, and subsetting are definitely addressed in various ways. I haven't seen IVIG and plasmapherisis specifically mentioned yet, but i hope they are. I'm not sure exactly what you mean by 'enecephalopathy', but I'm sure that the brain will have been mentioned.

 

[dreampop]

Dr. Rowe's and the IACFS sections suggested IVIG trials, and everyone emphasized biomarkers and subsetting. I didn't see too many doctors emphasizing auto antibodies, but I'm sure its on their mind.I didn't see plasmapherisis, but I'm pretty sure the NIH wouldn't consider such an extreme & dangerous treatment without some sort of autoimmunity confirmation first. I saw less about brain disorders than I would've liked, but am less worried about it because I know people like Cort are very aware of the brainstem weirdness and connections (as he wrote about this week). Speaking of which, nothing from the Zinns.

 

[JaimeS]

I believe I mentioned IVIG in mine, but I'm not sure if it's with the other patient responses. It was sent in late (after #MEAction's official submission) and was 70+ pages so they may not have included it, though I'm sure they've looked at it!

-J

 

[Gemini]

I was glad that a number of researchers/clinicians took the time to provide input.

Interesting IACFS proposed biomarkers(9) & treatments(6) starting on page 25 of the researchers/clinicians section:

Diagnostic tests/biomarkers:
NK cells
2-day CPET
Neuropsychological testing/information processing
Tilt table
Neuro-inflammation
Sleep
Familial studies
Energy metabolism/lactate processing
Post-infectious triggers
Treatments:
Rituximab
Antivirals
Pacing
Isoprinosine
Low-dose naltrexone
IVIG

Their submission is a long one, ~20 pages, with the disclaimer the lists are not exhaustive but highlights...

 

[Nielk]

The patient/advocate/org input was generally quite thoughtful.
I was glad that a number of researchers/clinicians took the time to provide input.

As @A.B. noted "NIH can't say they didn't get good feedback"

It will be interesting to see the summary by NIH and interesting to see where they go from here.

The lack of NIH/CDC inaction has never been because of lack of input from experts, advocates and patients.
The stakeholders have given their input for the past 30 years.
"interesting to see where they go from here" - exactly!

 

[Snow Leopard]

I've skim-read it all, so I nominate myself for the Esther12 Pink-onsie award!

Some very good responses, most points that I could think of were mentioned. (though there were a few questionable responses of peoples pet theories, that are well, scientifically questionable, like "stealth viruses").