NIH post-infectious CFS study

[A.B.]

It would be nice if they committed 100% to biological research though. It would build trust.

 

[Bob]

Question, yes, absolutely. What I meant was that we didn't need to suggest it because the NIH must have considered it.

Aren't you assuming that no external input could possibly raise the quality of the study because they must have thought of everything already?

 

[Bob]

Was is the difference between comparing the FMD group to CFS and the research already done comparing depression and CFS?

Good question. Depression probably wouldn't have gone down well as a control either, because of misdiagnosis of depression and ME, and because of comorbid depression in some ME patients.

 

[BurnA]

What do you think about putting something like this on the ME Action? Please suggest improvements. We want to be 100% clear, but also respectful.

I think the line

We ask that Dr Walitt be replaced by an impartial researcher.

Should be removed.

It's 100% clear without that line. Also, I don't think it's a good way to express concern by also proposing a solution. That is normally up to the other party to do. That way they get to save face and explain why they can't or dont want to, without offending anyone by saying No.

Frankly I think it's rude, and not a good communication or conflict strategy, it should be a discussion item not a demand. The message is the same. It's up to the NIH if they want to act.

 

[Scarecrow]

Aren't you assuming that no external input could possibly raise the quality of the study because they must have thought of everything already?

No, not at all. What do you think I'm doing on this thread?

 

[Cheshire]

There's no way this study will "accidentally" show that ME is psychosomatic. In regards to comparing ME with FMD: FMD patients do not have POTS, PEM, cognitive problems, or severe immune dysfunction. Also, FMD responds dramatically to placebo - ME does not. So I'm not buying into the worries being expressed here. Further clarification on why both control groups were chosen would be good...we're still working out channels of communication and the best way to move info back and forth.

Lots of FMD patients report an infection triggering their symptoms, lots have cognitive problems... The prevalence rate of psychiatric disorder in this population varies from study to study, but when matched with an adequate control group (neurological disease with same severity) they have the same rate of psychiatric comorbidity.
I don't know of any study about placebo response, i'd be happy to have a look, could you provide a lik?

I'm afraid FMD is a very heterogenous group (their only common trait being that medicine can't explain what they got, rings a bell?), its psychogenesis is not a proven fact, far from it.

Read this thread: http://forums.phoenixrising.me/inde...me-to-examine-the-evidence.41553/#post-670711

 

[Bob]

In regards to comparing ME with FMD: FMD patients do not have POTS, PEM, cognitive problems, or severe immune dysfunction.

Brian, are you certain that FMD patients don't have cognitive symptoms? I assumed that they did but I don't know anything about it.

I don't agree it's safe to assume that FMD patients don't have immune dysfunction, as that could potentially be the (currently unknown) cause of the illness. PANDAS patients have immune dysfunction and they'd be diagnosed with FMD if the cause (i.e. infection) of the illness hadn't been detected.

 

[BurnA]

Lots of FMD patients report an infection triggering their symptoms, lots have cognitive problems... The prevalence rate of psychiatric disorder in this population varies from study to study, but when matched with an adequate control group (neurological disease with same severity) they have the same rate of psychiatric comorbidity.
I don't know of any study about placebo response, i'd be happy to have a look, could you provide a lik?

I'm afraid FMD is a very heterogenous group (their only common trait being that medicine can't explain what they got, rings a bell?), its psychogenesis is not a proven fact, far from it.

Read this thread: http://forums.phoenixrising.me/inde...me-to-examine-the-evidence.41553/#post-670711

Let's just say there is overlap of test results between us and them. Why is everyone so convinced we get labelled as them and not that they get recognition that their disease is real?

Remember, the amount of testing being performed will easily separate a patient with a physical disease from one without.

 

[Bob]

No, not at all. What do you think I'm doing on this thread?

Fair point. I just meant that I think you're making an assumption that they considered mono patients as a control and that it's futile to suggest it to them. It might not be futile.

 

[Sasha]

Let's just say there is overlap of test results between us and them. Why is everyone so convinced we get labelled as them and not that they get recognition that their disease is real?

@Scarecrow quoted this (from the NIH study description?) earlier in this thread (my bold):

Additional inclusion criteria for functional movement disorders group:

-A self-reported illness narrative of the development of persistent, paroxysmal, or episodic motor symptoms as the consequence of an acute event or exposure or occurring with an acute onset.

-Diagnosis of clinically definite FMD utilizing Fahn and Williams criteria.

--Documented psychogenic movement disorder: persistent relief by psychotherapy, suggestion or placebo, or observed without the movement disorder when unobserved.

--Clinically established psychogenic movement disorder: inconsistent over time or incongruent with a classical movement disorder, plus other false neurological signs, multiple somatizations, obvious psychiatric disturbances, distractibility, or deliberate slowness.

-The diagnosis of FMD must be made by a neurologist and documented in their medical records.

Remember, the amount of testing being performed will easily separate a patient with a physical disease from one without.

So they're in the study on the basis - it would seem - that they have a psychogenic disorder. Given our history, I don't feel any confidence that if on tests they look similar to us, they're going to lose their "psychogenic" label rather than that we're going to (re)gain ours. They're being used as the very essence of a psychogenic disorder.

 

[Valentijn]

Why is everyone so convinced we get labelled as them and not that they get recognition that their disease is real?

Because the Lead Clinical Investigator has repeatedly spun biological results as being supportive of psychosomatic theories.

 

[Bob]

So they're in the study on the basis - it would seem - that they have a psychogenic disorder. Given our history, I don't feel any confidence that if on tests they look similar to us, they're going to lose their "psychogenic" label rather than that we're going to (re)gain ours. They're being used as the very essence of a psychogenic disorder.

I think @BurnA is making the point that if any biological tests are abnormal in the ME group then that will demonstrate that ME is a biological illness. Period. No matter what similarities there might be with the FMD control group. If there are any biological abnormalities in the FMD group then they will also have demonstrated that FMD is a biological illness. But I do understand that people are saying that the interpretations could be manipulated such that any similar abnormalities between the groups could be used to suggest that ME is a functional disorder.

 

[chipmunk1]

. Also, FMD responds dramatically to placebo - ME does not.

if they do why are they still so sick then?

 

[searcher]

if they do why are they still so sick then?

That's a question I've been asking. If FMD patients get "persistent relief by psychotherapy", then shouldn't they be cured? And at that point aren't they just another healthy control group, which seems pointless? And if they still have clear symptoms then aren't the claims about them having a clear psychogenic illness obviously bunk?

 

[A.B.]

if they do why are they still so sick then?

Maybe they dramatically respond to placebo in the same way CFS is curable with psychotherapy and exercise: not at all, only in the mind of the researchers, only in flawed studies.

Asthma responds dramatically to placebo too, as long as you define the response as the patient saying that they can breath better. If you actually measure breathing function there is zero improvement.

 

[roller]

if they do why are they still so sick then?

haha.. but this would point to the opioid-system involved?

 

[Kati]

I don't see the study as designed, in some "evil plot" way to show that ME is psychosomatic but my concern is that it's going to do that by accident.

The investigators appear convinced that FMD is a psychosomatic disorder, and my/our worry is that this is according to the same logic that psychiatrists have used to put all sorts of diseases in that category, including ours - namely, that they couldn't find objective findings. That doesn't mean that there aren't any to find.

So, suppose FMD is in fact an organic neurological disorder and that when it gets the same tests that the ME group get, similar things show up? Do we risk being classed as a psychosomatic disorder because we have similarities to the FMD group? That's the big worry.

I simply cannot understand why there's a "psychosomatic" control condition. Even if one could be definitive that FMD is psychosomatic (and in principle, I don't see how that's possible), what's the logic? What exactly is being controlled for? The belief that one is ill? If so, why doesn't every disease have such a control condition?

We need an explanation of this from Dr Nath.

Brian, I understand your frustration at people thinking that this is a study designed with ill intent but I think we need to be vigilant that it doesn't do bad things as a result of conceptual screw-ups.

I agree with @Sasha 's reasonning here and would add that the draft study protocol did not show up just by chance, with the mention of Reeves' criteria. Wallit is pretty high up in the hierarchy of the study and may have much weigh on the design and presenting the evidence with his own twist. The papers he has authored are quite telling of the views and bias he already has. Researchers like him very seldom change their mind after a career long of subscribing to the psychosomatic theory of poorly defined/ researched illnesses.

This said, I also agree with @viggster that the immunologicals studies is promising, but I would feel much better if we could discuss with Dr Nath alone of our concerns about his co-investigators.

 

[chipmunk1]

That's a question I've been asking. If FMD patients get "persistent relief by psychotherapy", then shouldn't they be cured? And at that point aren't they just another healthy control group, which seems pointless? And if they still have clear symptoms then aren't the claims about them having a clear psychogenic illness obviously bunk?

I think logic and psychobabble are two different, unrelated fields.

Maybe they dramatically respond to placebo in the same way CFS is curable with psychotherapy and exercise: not at all, only in the mind of the researchers, only in flawed studies.

Yes that could be. It's all in their mind. Haha.

 

[searcher]

Wilhelmina Jenkins (who asked the questions about the Patient Advisory Committee and RFAs during the Q&A) just posted this on the #MEAction fb page:

"I spoke briefly with Dr. Nath after the Grand Rounds presentation and he emphasized that the study is at the very beginning and is open to changes. He repeated his desire that patients be involved in the process."

 

[chipmunk1]

I simply cannot understand why there's a "psychosomatic" control condition. Even if one could be definitive that FMD is psychosomatic (and in principle, I don't see how that's possible), what's the logic? What exactly is being controlled for? The belief that one is ill? If so, why doesn't every disease have such a control condition?

No disease has such a control group.

I don't know anything about the study so it could well be legitimate but thinking about it:

We have FMD group. The worst of the worst of all in the mind.
Then we have a post-lyme symptom group that got better. A former all in the mind group who did get better for some reason.
Then we have an still all in the mind group (ME).

They might want to study what behaviours or thought pattern lead to the recovery in the lyme group and why the FMD group is still sick and how this relates to ME.