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

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
What should the NIH study in ME/CFS? They're asking you!

We have created a survey that will be used to craft #MEAction's reply to the NIH RFI. Your voice and your opinion matter! Please complete the survey; it should take no more than 10-30 minutes.

If brain fog stands in your way, you can leave the tab on your browser open and return to work on it later; the form will not 'expire'.

Link here:

http://bit.ly/NIH-RIF

More information:

Hi, everyone! Recently, the NIH put out an RFI -- a 'request for information' -- asking patients and patient advocates what kind of opportunities there are for studying ME, what technologies and tests might be utilized in the study of ME, and about the unique challenges ME/CFS research faces today.

#MEAction has put together a survey that asks what YOU would like the NIH to study. While there are many pre-entered ideas, there is also a short-answer at the bottom of each section for you to fill in ideas of particular interest to you.

If you don't feel you understand an item, feel free to look it up or skip that item.

I wrote the descriptions of each item on the survey, and did my best to be as neutral as possible while still presenting the facts.

We are looking to submit our answers by the deadline next Friday, and I will need some time to analyze the data we have gathered; so if you are interested in helping out, please fill out the form within the next several days. Remember, too, that you can submit your ideas as an individual, either 'as well' or 'only'. #MEAction is not your only portal to being heard by the NIH! However, by putting our voices together, I believe we will be heard all the louder.

I am pretty darned certain they will ask us how many patient voices are represented in our survey. Please do take the time to fill this out, and remember -- if you suffer from brain fog, you can leave the tab open on your computer and just answer a few questions at a time over the next several days.

The survey will take anywhere from 10 minutes to 30 minutes to complete.

Here is the Google form:

http://bit.ly/NIH-RIF

THANK you as always for your participation -- your voice and your opinion matter.

Jaime
 
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aimossy

Senior Member
Messages
1,106
@JaimeS I'm having a foggy night! Those two links are they for the same thing? Is there an MEAction article post on this that can be shared around? I need to come back and read properly. Is there a date that the survey and NIH feedback needs to be done by. Ill check the MEAction site in case there is an article there.
Edit: PS thank you for this.
 
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Old Bones

Senior Member
Messages
808
@JaimeS Is there a way to answer the survey without a Google account? Due to brain fog and the difficulty keeping track of my accounts (on-line and otherwise), I limit them to essentials only. I appreciate the effort you've put into this initiative. But, I'm reluctant to set up yet another account to confuse me -- no matter how worthwhile the cause.
 

A.B.

Senior Member
Messages
3,780
Done. In my opinion, it emphasizes specific pathogens too much, and stress testing (things like CPET, glucose tollerance tests, cognitive tests after mental tasks, etc) too little. A point could be made about certain ideas being overrepresented in the questions. I hope this will be taken into account. Nevertheless, I think you did a good job, and having such a survey is a good idea.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
@JaimeS I'm having a foggy night! Those two links are they for the same thing? Is there an MEAction article post on this that can be shared around? I need to come back and read properly. Is there a date that the survey and NIH feedback needs to be done by. Ill check the MEAction site in case there is an article there.
Edit: PS thank you for this.

There will be later today, for sure. The two links go to the same place -- basically, the top one is for people who already know all about this and don't need to read additional information.

Links will be back up, soon -- someone wanted to get a final look.

@JaimeS Is there a way to answer the survey without a Google account? Due to brain fog and the difficulty keeping track of my accounts (on-line and otherwise), I limit them to essentials only. I appreciate the effort you've put into this initiative. But, I'm reluctant to set up yet another account to confuse me -- no matter how worthwhile the cause.

Because we set it up to only allow one response from each user, it means you have to log in to a Google account. I will uncheck this to allow everyone to respond, and trust that we won't have lunatics who fill it out twelve times with the same responses! ;)

. In my opinion, it emphasizes specific pathogens too much, and stress testing (things like CPET, glucose tollerance tests, cognitive tests after mental tasks, etc) too little.

Definitely rate pathogens low, in that case, and the glucose tolerance testing, exercise testing, and neurological testing high -- for those who haven't looked at the survey, yet, each of these are included as separate items.

Pathogens must be listed one at a time. This may make it seem that too high a percentage of the questions include them. Yet these would have to be itemized, because someone who really wants us to research Lyme may think that Candida is immaterial and feel odd about checking something that groups pathogens together.

-J
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Hey guys, I'm about to put up the new link. Some changes were made to the survey after I completed it, so you may want to take it again. Sorry for the confusion!

-J
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Do try and figure out what each item means to the best of your ability, but if you really feel you can't say, please leave the question blank rather than choosing something in the middle. Otherwise lesser-known topics or meds may all end up in the middle.

We are fixing it so that you can skip stuff. :)
 

Kati

Patient in training
Messages
5,497
I am sorry to be the party pooper, but i dislike the survey. The first few pages, as far as i
could see gave choices about what drug trial should be undertaken, this without knowing the pathology. Right. Let's try vitamins and see if it works. (The Ritallin and vitamins trial (Montoya) did not work. Let's try colustrum. This is alternative medicine. Let's try IVIG. This is a whackamole game. Is this the best way NIH should proceed? Is this the best way NIH should spend precious money?

I would like my unfinished survey withdrawn please, I do not wish to participate.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
As I mentioned above, Kati, you are welcome to submit your own proposal to the NIH rather than throwing your hat in the ring with #MEAction. These are the sections of the survey:
  • Potential treatments
  • Pathogenic Triggers
  • Non-pathogenic Triggers
  • Technology and Testing
  • Potential biomarkers
  • Research gaps, emerging needs, and opportunities
  • Challenges and barriers to ME research
  • Additional research questions (essentially our 'misc' category)
  • Demographic data
As you can see, only the first section is about potential treatments.

Would you want Fluge and Mella to stop studying Rituximab because we don't understand why replacing B-cells should be effective? No research on LDN because we're not sure why opiate receptors should be important, yet?

There are treatments for Parkinson's even though we don't fully understand Parkinson's, and treatments for MS, even though we don't fully understand MS. There is no reason not to research treatments for ME, even without understanding what triggers or perpetuates ME. There are many drugs where we don't fully understand why they help the illness they help.

Finally, research is not required to work in one direction only. If it turns out that the Phase III clinical trial for Rituximab -- already underway -- is successful, that will be proof positive that malfunctioning B-cells are part of the problem for PWME. If LDN works, it will mean that opiate receptors are of interest, and we should study their function or dysfunction further.

No interest in arguing it back and forth, however. Here are some options:
  • Skip that section entirely
  • Rate each treatment as '1' meaning you don't want to study any treatments
  • Submit your own information to the NIH as an individual
-J
 

Kati

Patient in training
Messages
5,497
As I mentioned above, Kati, you are welcome to submit your own proposal to the NIH rather than throwing your hat in the ring with #MEAction. These are the sections of the survey:
  • Potential treatments
  • Pathogenic Triggers
  • Non-pathogenic Triggers
  • Technology and Testing
  • Potential biomarkers
  • Research gaps, emerging needs, and opportunities
  • Challenges and barriers to ME research
  • Additional research questions (essentially our 'misc' category)
  • Demographic data
As you can see, only the first section is about potential treatments.

Would you want Fluge and Mella to stop studying Rituximab because we don't understand why replacing B-cells should be effective? No research on LDN because we're not sure why opiate receptors should be important, yet?

There are treatments for Parkinson's even though we don't fully understand Parkinson's, and treatments for MS, even though we don't fully understand MS. There is no reason not to research treatments for ME, even without understanding what triggers or perpetuates ME. There are many drugs where we don't fully understand why they help the illness they help.

Finally, research is not required to work in one direction only. If it turns out that the Phase III clinical trial for Rituximab -- already underway -- is successful, that will be proof positive that malfunctioning B-cells are part of the problem for PWME. If LDN works, it will mean that opiate receptors are of interest, and we should study their function or dysfunction further.

No interest in arguing it back and forth, however. Here are some options:
  • Skip that section entirely
  • Rate each treatment as '1' meaning you don't want to study any treatments
  • Submit your own information to the NIH as an individual
-J
Thank you Jamie, I have since had the opportunity to see the whole survey. Ivthink my comments pertain to a lack of a logical progression in the survey. Starting with what med or compound should be studied is not logical. And if you give the nih people a choice of drug/compoiund to trial, i can bet you they will pick the cheapest one and go on up. And there goes 10 years of cheap research (and perhaps a waste of time) giving the choice of meds/compound the same weight, in the order presented is also of concern in my view. There should have been an option to add personal comments on that regard as well.

Like I said, I am sorry to be so critical when seemingly lots of work has been made in this regard, but personally I want NIH to get this right from the get go. I do not want th NIH to think that patients want trials of vitamin and supplements and not drug compounds. I do not want NIH to consider drugs that are not suggested in this survey, but have a potential to help.

Best, Kati
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
vthink my comments pertain to a lack of a logical progression in the survey. Starting with what med or compound should be studied is not logical.

Definitely not as a narrative, that's a good point.

The data will be arranged in a manner more consistent with logical progression, probably beginning with 'biomarkers', when I write up the report that summarizes the data.

Thank you for that feedback, Kati -- it is helpful. :)

-J