NIH: Post-exertional Malaise Research Opportunity (info via Workwell Foundation)

[Snowdrop]

If they need participants why can't they come to the ME community through one of it;s advocacy groups and request they put together a list of suitable people who have PEM and are very capable about articulating the experience? There should be a mix of house/not housebound.

Re Wallit: Money--the great converter of minds. Either that or a healthy fear of drowning with the old guard.

 

[BurnA]

If they need participants why can't they come to the ME community through one of it;s advocacy groups and request they put together a list of suitable people who have PEM and are very capable about articulating the experience? There should be a mix of house/not housebound.

Re Wallit: Money--the great converter of minds. Either that or a healthy fear of drowning with the old guard.

I don't see a big difference between what you are suggesting and what they actually did ?
They asked the Workwell foundation to help them recruit patients for the focus group, and the Workwell foundation helped to spread the word.

 

[BurnA]

Fwiw - from the NIH clinical study FAQs
"7. How are the enrolled participants being evaluated for ME/CFS?
The study team will provide information from the initial study visit for ME/CFS participants to the adjudication committee. The adjudication committee will then review the data and medical records to determine if the participant with ME/CFS can proceed to the exercise stress visit.

8. Why is there an adjudication committee that determines which ME/CFS patients are eligible to participate in the exercise stress visit?
An adjudication process ensures fairness and uniformity in the selection process.

9. Who are members of the adjudication committee?
Committee members are recognized experts in ME/CFS. The initial members include: Lucinda Bateman, Andy Kogolnik, Tony Komaroff, Benjamin Natelson, and Daniel Peterson. The chair of the adjudication panel is the Principal Investigator, Dr. Avindra Nath (http://irp.nih.gov/pi/avindra-nath)."

When you were copying the points above did you see this one ? That's what i was going by.
Wasn't there a list at one point of the experts who would be referring patients for this study - i think i remember that but can't be sure.

5. Will ME/CFS experts be involved in selecting patients to enroll?
People whose doctors have diagnosed ME/CFS will be eligible to enroll if they meet other eligibility requirements. Clinical experts will be confirming a diagnosis of post-infections ME/CFS to determine who can proceed to an exercise stress visit.

 

[BurnA]

I'm not sure I understand your question. If the patients are selected by ME experts, why is there a need to develop an interview tool?

I dont know, maybe selection is the wrong word, perhaps referral would have been better. But that was my impression from a while ago, I have not kept very up to date on this.

 

[viggster]

This person has certainly gone through a very dramatic change in perspective - pretty much as soon as he smelt the money. I do not have any confidence in this statement.

Errr....what money would that be? He gets his NIH salary regardless of whether he studies ME/CFS.

 

[Hutan]

That is the problem with not using ME experts in a study of ME patients.

How can you compare the experience of an ME expert with decades of experience treating thousands of patients to a focus group of five anonymous patients on the phone?

I saw something that said that the NIH has had presentations by a number of ME experts and plans more. Also that they are developing some forum for intramural and extramural ME researchers. Maybe someone can remember where that was reported.

I think we have a right to be suspicious and watch carefully, but these latest developments seem to be going in the right direction.

ETA

Dr. Avi Nath is leading an ME/CFS Special Interest Group at NIH. The website says, “The ME/CFS SIG seeks to provide a forum in which to disseminate and discuss clinical and scientific information about ME/CFS. It is open to all interested intramural and extramural investigators seeking to learn more about ME/CFS and hopes to foster new research collaborations across the NIH campus.” As Dr. Nath had promised, outside experts in ME/CFS are brought in to give talks to the research team. To date, those speakers have been Dr. Anthony Komaroff, Dr. Leonard Jason, Dr. Daniel Peterson, and Staci Stevens and Dr. Mark Van Ness.

 

[Nielk]

I saw something that said that the NIH has had presentations by a number of ME experts and plans more. Also that they are developing some forum for intramural and extramural ME researchers. Maybe someone can remember where that was reported.

I think we have a right to be suspicious and watch carefully, but these latest developments seem to be going in the right direction.

Yes - it's good to see that they are making an effort to educate themselves about ME. I'm happy to see that. But, it should not prevent us from pointing out concerns we might have with certain aspects of the intramural study itself.

 

[viggster]

When you were copying the points above did you see this one ? That's what i was going by.
Wasn't there a list at one point of the experts who would be referring patients for this study - i think i remember that but can't be sure.

5. Will ME/CFS experts be involved in selecting patients to enroll?
People whose doctors have diagnosed ME/CFS will be eligible to enroll if they meet other eligibility requirements. Clinical experts will be confirming a diagnosis of post-infections ME/CFS to determine who can proceed to an exercise stress visit.

I think folks are confusing two things: Enrollment in the *study* versus participation in the focus group on PEM. Two separate things. This FAQ is about enrollment in the study itself.

 

[BurnA]

I think folks are confusing two things: Enrollment in the *study* versus participation in the focus group on PEM. Two separate things. This FAQ is about enrollment in the study itself.

If you are thinking I am confused, I might be, but not in the way you imagine....

I was responding to previous posts, maybe you can clarify if you can ?

That is the problem with not using ME experts in a study of ME patients.

What do you mean ? The patients for the main NIH study are selected by experts,

If the patients are selected by ME experts, why is there a need to develop an interview tool?

 

[worldbackwards]

I haven't got the faintest idea what anyone's talking about anymore. But I'm generally in favour.

 

[TiredSam]

Errr....what money would that be? He gets his NIH salary regardless of whether he studies ME/CFS.

Why doesn't he go and do something else then?

 

[viggster]

If you are thinking I am confused, I might be, but not in the way you imagine....

I was responding to previous posts, maybe you can clarify if you can ?

I just saw some posts talking about the new PEM focus group, others on this thread talking about recruitment for the study...and some posters seemed confused that these are two separate groups.

 

[Never Give Up]

Seeing comments on Facebook that people are getting calls to schedule participation and the first one is November 14th.

 

[Seven7]

Looks like Walitt isn't going anywhere So Hallett and his team are probably still involved as well, meaning dodgy MRI interpretations comparing ME to functional disorders or depression are pretty much a certainty.

I'm very disappointed with the NIH. Researchers who explicitly state that a disease is psychosomatic should not be responsible for any aspect of biomedical research into that disease, pending complete retraction and disavowal of their prior statements.

We need to send one of those investigative reporters after the money. Is there an insurance lobbying behind it, affiliations.... Nobody goes through all the trouble for the love of it. Unless you are a fanatic which is even more dangerous.