USA: National Institutes of Health (NIH) intramural ME/CFS study

Status
Not open for further replies.
Moved posts

I have had access to the NIH intramural study report but it is embargoed until next week. We can have a full discussion then.

I think it may be useful to examine their attempts to analyse brain activity and the role of sympathetic drive. I am not convinced so far that they are not looking at an artefact of being a test subject in a study. That could be overcome with studies of a range of other conditions.

Another thing that struck me, which might also be of relevance to DecodeME, is that they gathered quite a big cohort of people who had been told they had ME but did not fit criteria in the end. For the NIH study it was much bigger than the studied cohort. I think there would be very valuable information in studying these 'not quite ME' subjects to see to what extent they are different from ME subjects. In other words rather than simply bemoaning the inconsistency of diagnostic criteria for studies we should exploit the grey area to find out what is specific and what is not.
 
Last edited by a moderator:
Jonathan Edwards said:
I have had access to the NIH intramural study report but it is embargoed until next week. We can have a full discussion then.

I think it may be useful to examine their attempts to analyse brain activity and the role of sympathetic drive. I am not convinced so far that they are not looking at an artefact of being a test subject in a study. That could be overcome with studies of a range of other conditions.

Another thing that struck me, which might also be of relevance to DecodeME, is that they gathered quite a big cohort of people who had been told they had ME but did not fit criteria in the end. For the NIH study it was much bigger than the studied cohort. I think there would be very valuable information in studying these 'not quite ME' subjects to see to what extent they are different from ME subjects. In other words rather than simply bemoaning the inconsistency of diagnostic criteria for studies we should exploit the grey area to find out what is specific and what is not.
Click to expand...

"For the NIH study it was much bigger than the studied cohort." --- NIH study?
EDIT - the Nath (NIH) study?

Thank you very much - I'll need to think about your reply (you're way ahead of me - great!). I think I noticed sleep studies - another option?
 
Last edited:
Jonathan Edwards said:
I think it may be useful to examine their attempts to analyse brain activity and the role of sympathetic drive. I am not convinced so far that they are not looking at an artefact of being a test subject in a study. That could be overcome with studies of a range of other conditions.
Click to expand...
That sounds ominous. I hope they are not placing weight on the old HPA axis, sympathetic overaction, it's really just stress hypothesis beloved of some BPS people.
 
Trish said:
I hope they are not placing weight on the old HPA axis, sympathetic overaction, it's really just stress hypothesis beloved of some BPS people.
Click to expand...

It doesn't have to be. Stress is by definition a response to a threat. If the autonomic nervous system is screwed up by something like dysregulated cholinesterase (a bit like the screwed up AChR in myasthenia) then the effects could stop people in their tracks in the absence of any current threat. And lymphocytes have ACh receptors.
 
I suspect I have postexertional sympathetic overactivation. I think it's just a consequence of exertion being somehow physically more stressful than normal, so it triggers these threat responses. Prolonged upright posture also triggers it. Maybe that is an important clue: a manifestation of suboptimal perfusion?

The psychosomatic theorists are detached from reality and so full of their ideas that they can't listen and observe what is really happening in this illness.
 
Jonathan Edwards said:
It doesn't have to be. Stress is by definition a response to a threat. If the autonomic nervous system is screwed up by something like dysregulated cholinesterase (a bit like the screwed up AChR in myasthenia) then the effects could stop people in their tracks in the absence of any current threat. And lymphocytes have ACh receptors.
Click to expand...
Thank you very much for the insight.

OK my standard post (no need to reply!) would this be expected to have a genetic signature i.e. DecodeME or a rare genetic variant (whole genome sequence) study?

EDIT - "dysregulated cholinesterase" - "Gulf War" syndrome comes to mind!

Further EDIT(!) "lymphocytes" have they been shown to be relevant?
 
Last edited:
I guess we'll just have to wait until publication day on Wednesday. Not much point speculating before that. I don't hold out high hopes on the grounds that they don't, from their previous papers on PEM, have a good grasp of what it is, so how did they manage to diagnose accurately, and the small sample size.
 
Trish said:
I guess we'll just have to wait until publication day on Wednesday. Not much point speculating before that. I don't hold out high hopes on the grounds that they don't, from their previous papers on PEM, have a good grasp of what it is, so how did they manage to diagnose accurately, and the small sample size.
Click to expand...
I agree.
Interesting though (for me) that they struggled to find "true ME/CFS" i.e. many (/most?) didn't meet the criteria. I think Jonathan's comment, re this "grey" area being useful, is interesting.
 
FMMM1 said:
Interesting though (for me) that they struggled to find "true ME/CFS" i.e. many (/most?) didn't meet the criteria.
Click to expand...

Wasn't it. I'd assumed a good number of the exclusions could be due to comorbidities / medication / recent surgery / ongoing investigation / pregnancy or fertility treatment / etc, but it would be puzzling if that wasn't the case.
 
Kitty said:
Wasn't it. I'd assumed a good number of the exclusions could be due to comorbidities / medication / recent surgery / ongoing investigation / pregnancy or fertility treatment / etc, but it would be puzzling if that wasn't the case.
Click to expand...
Interesting ---comorbidities --- cause or consequence or unrelated? If unrelated then presumably those with that [co-occurring] disease have the same incidence of ME/CFS as the rest of the population -- 0.4% or whatever?

I think the problem with PEM is that it's based on a questionnaire --- although maybe that's accurate?
 
FMMM1 said:
Interesting ---comorbidities --- cause or consequence or unrelated?
Click to expand...

People with co-morbidities might be excluded from some trials because they have diseases with overlapping symptoms, so it's not possible to say for certain which of them is causing Symptom X or Y. This could make the results of some studies unacceptably muddy.

I wasn't even sure I'd able to take part in DecodeME because I have psoriatic arthritis, which can cause severe fatigue during active phases. Also, my medication has side effects in some people that might be confused with ME symptoms. (In the end I was invited to submit a sample, but the disease might rule me out of some types of trial, specially if medication's involved.)
 
Status
Not open for further replies.
Back
Top Bottom