P2P workshop Dec. 9 & 10, 2014

[Esther12]

Good question from Jason.

Q1) Why are patients unhappy with CBT when trial data seems to show improvement?
Q2) What do you think about recovery claims?
Q3) Did you scrutinise methodoligical issue?

A1-2) Don't know. I see it as a clinician, many of these approaches are intended to help patients cope and manage, and difference forms of therapies show improvement which is very different from cure, which gets to the question on 'cure'. I did not include information on cure in my presentation as many of the threshold for recovery are poor. [Goes on to talk about PACE recovery problems... seems to slightly mangle Chalder Fatigue scale stuff again].
A3) Yes we did look critically at methodological issues. [Not very well imo!]

Follow-up comment from Natelson: It looks like there were 2 UK studies that showed strong positive results, and negative US studies.

 

[Nielk]

Unger -

The criteria used for Her multi site study used is Fukuda and CCC.

 

[Bob]

A panel member (I think she's an author of the literature review) is nicely laying into the PACE trial recovery paper, explaining 'flaws', 'contradictions' and 'inconsistencies' in the thresholds. (And she explicitly described the exact nature of the thresholds.) But she didn't mention the trial by name - she just said it was a 'large trial'.

She also referred to CBT etc as simply being a way to help patients cope with chronic illness, and indicated that this is different to such therapies being used as 'cures'. She then went on to explain that they omitted 'recovery' papers from the review of CBT/GET literature, because they were inconsistent and flawed etc., and she then focused on the PACE recovery paper.

Edit: crossed posts with Esther.

 

[Nielk]

Fletcher is looking for 50 men with mecfs for her new study.

 

[Hope123]

Does anyone have a link to make comments today? Yesterdays doesn't apply today. Thanks

Here's the link for today.

http://videocast.nih.gov/ContactUs/?LiveID=14727

Please DO SEND comments. They only received 4 online comments yesterday due to technical issues. So please submit comments on today and yesterday's talk.

 

[Nielk]

Miller

How important is immunological research in finding causation.

Hornig


Very important.

 

[GalaxiiGrl]

Good question from Jason.

Q1) Why are patients unhappy with CBT when trial data seems to show improvement?
Q2) What do you think about recovery claims?
Q3) Did you scrutinise methodoligical issue?

A1-2) Don't know. I see it as a clinician, many of these approaches are intended to help patients cope and manage, and difference forms of therapies show improvement which is very different from cure, which gets to the question on 'cure'. I did not include information on cure in my presentation as many of the threshold for recovery are poor. [Goes on to talk about PACE recovery problems... seems to slightly mangle Chalder Fatigue scale stuff again].
A3) Yes we did look critically at methodological issues. [Not very well imo!]

Follow-up comment from Natelson: It looks like there were 2 UK studies that showed strong positive results, and negative US studies.

Though I noticed that Smith didn't use the name "PACE" when referring to the trial. She just called it a large trial, and went on to mention the problem with them lowering the threshold for the SF-36 score required for "recovery" to a level that was lower than what was required to be included in the study.

Also, Smith keeps insisting that the PACE trial was well-designed and conducted, and therefore gets a "good" rating in the literature review. Somehow there is no requirement for a study to be free from fundamental flaws or data manipulation in order to receive a "good" rating.

 

[Nielk]

Hornig - we need to look at "acute" CFS. How about ME?

 

[dancer]

My main take-away from listening is that I'm SUPER grateful for those who are protesting outside today.

 

[Nielk]

My main take-away from listening is that I'm SUPER grateful for those who are protesting outside today.

Yes. Definitely. I wish I was there.

 

[Christopher]

Who are they? I can only comment on one, Benjamin Natelson, who is attached to one of the hospitals in NY. I will preface by saying that I have a decades-long history of post-viral CFS (with encephalitis), followed about 18 years later by a degenerative period that is even more consistent with ME. Most of my symptoms were directly associated with infections or other medical events and definitive points in time.

Dr Natelson is involved in a CFS study that sounded decently useful, so I went to see him last June for the purpose of being evaluated for inclusion in it. I offered to provide any of the many test results I've had in recent years, including those demonstrating chronic immune abnormalities. None were requested and no more than a superficial history was taken, after which Dr Natelson told me I was excluded. Based on?.....too many symptoms? Too many complications from long-standing neglect?...He didn't say directly, but recommended psychotherapy after giving me a dose of the usual - though shocking in this instance -"When did you go on disability, what were you doing before that, why haven't you been working", etc. Zero interest in critical - medical - aspects of my history.

Cutting edge stuff.

 

[Nielk]

Q. How does CBT for mecfs differ from CBT of other chronic disease?
A. Don't know.

 

[Hope123]

I have watched much of the meeting. Did they take ANY questions or comments from online viewers?

More government lip service but no real accommodation for disabled patients or busy professionals.

175 people watching the webcast.

 

[Hope123]

Q. How does CBT for mecfs differ from CBT of other chronic disease?
A. Don't know.

Well, they could start by looking at the PACE manual. In fact, I believe Dr. Nacul quoted from it yesterday and how GET was based on de-conditioning.

 

[Nielk]

Mary Dimmock

Pem. Is it a required symptom?

Unger

It depends of how you collect the data. Case definitions need better measures. Just bc patients say they have pem, doesn't mean they actually have it????

She is talking in circles and not really answering the MOST IMPORTANT QUESTION HERE!!!

 

[dancer]

Patient is commenting that CBT to treat this illness is ABSURD.

 

[Nielk]

Diane Lewis

Patient and clinical social worker.
Q. CBT is not helping mecfs patients.
When you can't lose anything more CBT will not help you!!!

She is very emotional about this. She has used CBT with other issues but it doesn't work with CBT.

CBT will not help with our brain function deficits.

A. Smith

We reviewed all trials of all types of counseling and exercise and we just report what the studies show.

She doesn't take into consideration how flawed those trials were.

 

[Nielk]

Miller.

The charge to this panel is huge.

The disease has been called many names. What illness are we here discussing. We need to clarify. I have ME per my clinician.

A smith

The evidence looked at mecfs and looked at all criteria with the names CFS and mecfs.

 

[Nielk]

Unger says that me CFS and mecfs were looked at.

 

[dancer]

Yes...that is SO frustrating. The reviewers keep parroting "we just looked at the evidence." But they threw out so many current important biomedical findings and seemed impressed by findings from PACE that patients KNOW are deceptive and flawed.

(sorry, this was in response to an earlier comment)