NIH post-infectious CFS study

Kati

Patient in training
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If you read our blogs on our site, MEAdvocacy.org, you will see that we included letters expressing our viewpoint to Dr. Collins.

I think that it is clear that you don't agree with our stand. You are entitled to your opinion, and we are entitled to ours.

I don't know how repeating your opinion time and time again will change anything.

Can we just agree to disagree?
Well, @Nielk, it goes likewise, I don't know how repeating your opinion time and time again will change anything.
 

Sasha

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Update in an article by Cort, interviewing Vicky Whittemore:

Cort said:
We’re in middle of the summer. The intramural NIH study was reportedly going to begin in summer. Can you give us a progress report on that? Has the protocol been settled and have the patients started arriving?

The protocol and the informed consent forms are being finalized and healthy volunteers are being solicited to participate in the study with the goal of admitting the first set of health volunteers in September. Once the techniques have been refined in studies of healthy volunteers, the protocol team will begin to bring individuals with ME/CFS to the NIH campus.
http://www.healthrising.org/blog/2016/08/30/nih-chronic-fatigue-syndrome-change-coming/
 

Izola

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Hi: I am having some very bad brain and function these day but I wanted to mention that Cort had an article (+ interview?) about Dr. Daniel Peterson a while back. I can't remember much except that Dr. Peterson was interested in something like the biologic markers left behind from pathogens in ME pts as opposed to others who's diseases didn't result in the currently often life long Kafkaesqueian nightmare Hell we end up living. He was collaborating w/ NIH (?) and I think, Lipkin.

I'm sorry I don't have the cite :( but it is on PR probably about 2011 or 2012. Iz
 

Simon

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Updated Clinicaltrials.gov listing is here: https://clinicaltrials.gov/ct2/show/NCT02669212

Looks like they've upped the number of subjects: 50 ME/CFS patients, 50 recovered Lyme patients, 50 healthy controls. Up to another 36 will be in the PEM focus group.

Inclusion criteria confirm use of CCC to select patients for exercise testing.
That's great. The substantial increase in sample size gives them a much better shot of detecting real differences, especially if there are subgroups (which Nath has already says he expects to find).

And I'm a big fan of the PEM focus group - I don't think we yet have a good way for defining/measuring PEM in terms of questionnaires, in large part because questionnaires are drawn up by researchers. What's needed is this - a bottom up approach with patients given the chance to discuss PEM and how best to describe it among themselves. I hope this will eventually lead to better PEM questionnaires. I think that some studies find quite high rates of PEM (eg with depression) and suspect one reason for that is loose PEM descriptions, because I'm not sure that people with depression experience PEM like PWME
 

Valentijn

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This NIH study is looking a lot better now with a larger sample size and a PEM group built with the advice from experts.
And with Walitt's statements implying that he's on a short leash regarding his psychosomatic bullshit. I'm still very worried about Hallett and his team members, however. But at least those three lost their functional movement disorder "control group".
 
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Valentijn

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Sounds very promising. I'm curious to see whether PEM can differentiate between ME/CFS and Lyme groups.
I'm pretty sure it can, when properly defined, on account of Lyme patients (and specialists) frequently saying that we all need to exercise a bit :p
 

BurnA

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I'm pretty sure it can, when properly defined, on account of Lyme patients (and specialists) frequently saying that we all need to exercise a bit :p
Hopefully these tests should differentiate

To explore the pathophysiologies of fatigue and post-exertional malaise (PEM). [ Time Frame: Week 2: Pre-exercise stress, 4 hours, 24 hours, and 48 hours. Additional measurement for PI-ME/CFS at 72 and 96 hrs. ] [ Designated as safety issue: No ]
Fatigue will be explored using tasks designed to create muscular and cognitive fatigue. PEM will be explored using an exercise stress and measuring the symptomatic and biological alterations that occur before and afterwards.
 

BurnA

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This NIH study is looking a lot better now with a larger sample size and a PEM group built with the advice from experts.
Yes, I have the same impression.

Odd that they didn't publicise the increase in patient no.s more, is there any official communication channel ?

I wonder too their reasoning for keeping healthy control no.s the same as patients.
Costs the same to test a healthy person as it does a ME patient. Ron Davis made the point at the iime research conference that you don't need to keep both no.s the same, depending on results. Maybe they are playing it safe, and I don't know the math behind it, but if anyone does i'd be interested.
 

Denise

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