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TAKE SURVEY -- What should the NIH study in ME/CFS? They're asking you!

TigerLilea

Senior Member
Messages
1,147
Location
Vancouver, British Columbia
There has been research on Vitamin C for cancer patients and CoQ-10 for inherited mitochondrial disorders. No one thinks these aren't 'serious illnesses' because there are OTC medications or supplements that can be helpful in addressing them. OTC supplementation studies and recommendations doesn't appear to have affected how serious people believe other conditions to be. I think our main issue lies elsewhere, with poor medical education and poor funding, not with the suggestion that ME -- like other illnesses -- can be affected by cheaper, easier to access medication.

If they discover that CFS/ME in part is due to a deficiency in a particular vitamin, then I don't have any problem with them doing further research on that discovery and trying to figure out why that problem exists in the first place. But if the research were a case of them throwing random vitamins at us to see if they help, that's a waste of research funds and time.
 

Kati

Patient in training
Messages
5,497
If they discover that CFS/ME in part is due to a deficiency in a particular vitamin, then I don't have any problem with them doing further research on that discovery and trying to figure out why that problem exists in the first place. But if the research were a case of them throwing random vitamins at us to see if they help, that's a waste of research funds and time.

The complicated part is that sometimes vitamins will not help much if the problem is upstream. I would say this would be in the realm of personalized medicine to find out what the exact metabolic problem is. Recommending COQ-10 for everybody with ME is fine because it doesn't present a risk. However is it effective? If it was effective, people would have stopped from getting sicker and sicker and we wouldn't be here pondering the benefits of vitamins and supplements.

The folks who have been sick for 20-30 years would not be here. But they are.
 
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TigerLilea

Senior Member
Messages
1,147
Location
Vancouver, British Columbia
The complicated part is that sometimes vitamins will not help much if the problem is upstream. I would say this would be in the realm of personalized medicine to find out what the exact metabolic problem is. Recommending COQ-10 for everybody with ME is fine because it doesn't present a risk. However is it effective? If it was effective, people would have stopped from getting sicker and sickerand we wouldn't be here pondering the benefits of vitamins and supplements.

The folks who have been sick for 20-30 years would not be here. But they are.
Totally agree with you. I don't think that taking a vitamin supplement is going to do anything to help us. They need to find what the problem is and fix that.
 

JenB

Senior Member
Messages
269
Also, if there is something you don't want people to study, vote it down rather than saying it shouldn't be there.

As the questions on CBT and GET show, this survey isn't only about what we DO want to look at, but what we consider unimportant or useless or hazardous!

-J


I really wouldn't worry about the alternative medicine questions. Asking the question doesn't imply the answer. We have questions on the survey about whether the NIH should research CBT and GET. The survey is not meant to mirror the avenues most people are likely to support. It's meant to convey the full RANGE of options so that we can understand what patients want urgently in relation to things they want less or may not want at all. It's meant to help convey to the NIH what patients don't want just as much as it is meant to convey what they do want. If Rituximab were the only question, having people rate it highly would give the NIH very little information about what are priorities for patients – you can only know that in relation to other things. The OTC options give you the chance to tell the NIH you DON'T want them to prioritize CoQ10 research, for example. If we didn't ask the question, how could they know that?

Ultimately, I don't think there is any danger in reflecting whatever the majority of patients decide they want, whether or not I personally agree with it. But I am a democrat. I trust the wisdom of the central tendency.
 

mango

Senior Member
Messages
905
I haven't been able to find the comments based on this survey that MEAction submitted(?) to NIH.

Are they published somewhere? If not, why not?
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
I don't think we will publish every comment that was made; if you look at what #MEAction has done in the past, we tend to post selections of comments. We had 1,800 responses, each of which had dozens of written-in comments.

We are working on publishing the results of the questions for which there were numerical answers in a number of smaller posts. However, right now I have the unfortunate duty of prioritizing an article concerning the members of our community who have passed away this year.

So the answer to "why isn't every comment available" is that it would be an enormous undertaking with tens of thousands of items, all of us are sick, and sometimes one thing has to be prioritized over another.
 

Nielk

Senior Member
Messages
6,970
I don't think we will publish every comment that was made; if you look at what #MEAction has done in the past, we tend to post selections of comments. We had 1,800 responses, each of which had dozens of written-in comments.

We are working on publishing the results of the questions for which there were numerical answers in a number of smaller posts. However, right now I have the unfortunate duty of prioritizing an article concerning the members of our community who have passed away this year.

So the answer to "why isn't every comment available" is that it would be an enormous undertaking with tens of thousands of items, all of us are sick, and sometimes one thing has to be prioritized over another.

I think what @mango meant and what I'm sure many would like to see, is - what did MEAction submit to NIH based on the survey? or did you submit all results and comments that people made?
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Thanks guys, I don't think I understood you. Let me explain what's going on / where we are in the process. :)

One of my ME issues is that I have a really hard time judging what is important versus what is unimportant information; it all seems equally useful to my ME-brain. I also noted that the RFI specifically asked for evidence for each thing we were suggesting.

So I produced a behemoth of a report. It was 70+ pages long, and it basically took everything where the average was a '4' or better in importance (of 5) and discussed what it was (because who but ME patients even know what 'The Vagus Nerve Hypothesis' even means). Then, it included citations and quotes for evidence of why it was important. Then, it paired the ideas for research (or problems) with suggestions (in the form of 'what the community thinks are good solutions' section of the survey). You'd be surprised how easily these slotted together even though they were in different sections of the survey. [Edit: then, I paired all of this with patient comments that were applicable in their own section; then, there was a Key Points section at the end of each that summarized all of this.]

In the case of 'accurate definitions' that meant consulting epidemiological studies and statistical studies that show the direct harm in calling what is probably many diseases the same thing, or in conflating the research definitions with one another, or actively proving the uselessness of the Fukuda criteria. Organization of the report was a challenge, and I ended up putting it into three main sections and papering my living room floor with quotations and papers etc.

When I handed to #MEAction they understandably said WHUT because the NIH was probably getting a million reports and they ain't gonna read this. So other members of #MEAction cut my behemoth down to a few pages -- I'm still not quite sure how!

So my own work wasn't wasted, I tweaked the language of my report so that it was decoupled from #MEAction's stance and branding. I generally agreed with the patient community, but I added a few things that were my opinion alone, and some suggestions that were more colored with my own perspective, and sent it in as an individual, with the addendum to Vicky that I AM AN INDIVIDUAL THIS IS MY REPORT NOT ANYBODY ELSE'S OPINION etc so that there was no question that I was submitting not as #MEAction.

My goal is to produce a short report of our survey's findings and begin to post as articles on #MEAction next week.

Writing the obit article destroyed me (will be out at 4pm ET). I think I'm going to sleep soon, but please let me know if you have any additional questions if you can ask them in the next half hour or so.

[Edit: this is by way of saying that so far as I know, I will be publishing the survey results themselves]
 
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Hutan

Senior Member
Messages
1,099
Location
New Zealand
Thanks for all your hard work @JaimeS.

My goal is to produce a short report of our survey's findings and begin to post as articles on #MEAction next week.
Sounds good, I look forward to reading these.

So other members of #MEAction cut my behemoth down to a few pages -- I'm still not quite sure how!
So that was what was submitted to NIH as being from MEAction? Was that posted somewhere? Sorry, I may well have missed it.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
So that was what was submitted to NIH as being from MEAction?

Yes. :) Glad it was clear even through my brain fog. :)

Was that posted somewhere?

It wasn't, you didn't miss it. What I have are the survey results and the graphs / charts / quotes I made or gathered from survey data. That's what I was planning to write about (the survey information), but the actual document we submitted to the NIH should be posted as well. Since I wasn't the one who finalized / edited though, I am not in possession of that document. Due to that factor, I can't make a concrete promise in regards to when I would have that ready for publication.

I am also happy to PM my own individual RFI to anyone who is interested, after #MEAction's comes out.

-J
 

Comet

I'm Not Imaginary
Messages
693
MEAction's NIH RFI response is now published on the NIH website! :)

Direct link to the pdf with RFI responses from patient advocacy organizations:
https://www.nih.gov/sites/default/f...itiatives/mecfs/rfi-patient-organizations.pdf
Looks like MEAction's response starts at the bottom of page 22 of the link Mango posted. There is a HUGE amount of info - wow!

Thanks for posting this @mango! And BIG thanks to all the people who took the time to organize and submit these RFIs. :star: :cool: :star: