The P2P Draft Systematic Review Is Up

[Dolphin]

A related point is if the review makes some good points, they can be quoted in a variety of scenarios.

True. And they totally trash the Empirical approach, and mention possible harms of GET several times.

But they twist CBT into something useful as a treatment, when it should really take the same place as it does in any other disease: if wanted, offered as a coping tool.

It is not a "well, that's the best we have on offer, because we have many studies on it and not so many on other things, so we'll recommend it as a treatment."

True*.

My point was to motivate people from outside the US that if they give feedback which means some useful points are made, this could be useful to achieve.

*On a technical point, the way CBT is offered for ME/CFS as a potentially curative treatment for all, rather than an adjunctive therapy for a subset, is different (as you know, but I feel it's useful to point out).

 

[Kati]

True*.

My point was to motivate people from outside the US that if they give feedback which means some useful points are made, this could be useful to achieve.

*On a technical point, the way CBT is offered for ME/CFS as a potentially curative treatment for all, rather than an adjunctive therapy for a subset, is different (as you know, but I feel it's useful to point out).

The best evidence they had in 1985 for treting stomach ulcers was to reduce stress. Which this litterature review, they basicallly decided to discard the good papers and keep a lot of the psych papers.

 

[alex3619]

The best evidence they had in 1985 for treting stomach ulcers was to reduce stress. Which this litterature review, they basicallly decided to discard the good papers and keep a lot of the psych papers.

For stomach ulcers, arguably 1983 . Also it took over ten years of patient insistence on treatments before the medical community relented. PATIENTS made it happen.

The problem is that the EBM approach is designed to find answers in mature and properly funded research areas. Not research areas in which most research has languished in funding isolation, and a very small number of claimed experts with an extreme viewpoint have had the funding to do many RCTs ... and not double blinded either. I predict this thread, and its follow ups, will wind up much bigger than the PACE thread.

 

[Kati]

I did my nursing degree from 1988-1991 and we learnt in school that stomach ulcers were due to type A personalities.

@alex3619 you made a good point regarding EBM. we are stuck because there is no funding and there are just very few willing to research us. Then we are being told by the NIH itself that there will be no R01 because there is not enough researchers.

It makes me want to tell them: 'Be part of the solution. Do not add to the pile of dung.'

So who does it benefit?
-diseases like HIV, cancer. Funding monopoly if you will.
-Insurance companies.
-CDC (who can avoid facing humiliation for a few more years)
-psych lobby. DSM5. Wessely, White, Per Fink.
-perhaps in a sick way, the IOM.

It's a sad state of affairs.

 

[Gingergrrl]

@Kati Even when I was getting my Masters in Social Work (1996-98) we basically learned that CFS and fibro were under the realm of psychiatry and I had no knowledge of the issue from any other source at that time.

 

[WillowJ]

In the Key Questions, they ask about a) benefits and b) harms about treatments.

When it comes to diagnosis, they ask only about harms, not about benefits at all.

Why?

 

[WillowJ]

In the Key Questions, they ask about a) benefits and b) harms about treatments.

When it comes to diagnosis, they ask only about harms, not about benefits at all.

Why?

 

[WillowJ]

@medfeb , I read bits and pieces of it last night (still reading, but don't want to give the impression I already finished the entire Executive Summary!).

On page 12 of the full report, under Self-Reported Symptoms as Diagnostic Tests (begins bottom of page 11), they discuss the Reeves method. They say:

The MFI-20 had reasonable sensitivity for the Reeves fatigue criteria but poor specificity (0.95 and 0.27 respectively); none of the AUCs for the MFI-20 were above 0.90. [40 ]
In this study, the CDC Symptoms Inventory had poor sensitivity and specificity, as did the SF-36 subscales of physical functioning, role physical, social functioning, and role-emotional (none with AUC, sensitivity, or specificity above 0.90). [40]

They determined that meeting the cutoffs for two or more of these three subscales could be used to designate substantial reductions in function and to potentially distinguish those with ME/CFS from those without ME/CFS; for the community-based ME/CFS sample, sensitivity was 0.93 and specificity was 0.75; for the tertiary care sample, sensitivity was 0.96 and specificity was 0.75. [41 ]

These researchers also used the MFI-20, the CDC Symptom Inventory, and the SF-36 to assess the sensitivity and specificity of the 2005 Reeves criteria for identifying ME/CFS in the community population compared with healthy controls; the AUC for Reeves criteria was 0.70 (sensitivity 0.65; specificity 0.76). [41 ]

These studies do not appear to contribute to operationalizing the ME/CFS criteria given the inconsistencies in the results.

The subscales of the SF-36 show promising results in a tertiary care – recruited population (the SF-36 scores for vitality, rolephysical, and general health were above 0.90); [40] however, this was not true for the communityrecruited ME/CFS patients, nor in a separate study.

Paragraph breaks added.
My bolding.

Same section says you also cannot use HADS and SIP and MFI to diagnose CFS, as it proves only you can tell people are sick/ not sick and:

Overall, it is unclear whether these measures could diagnose ME/CFS if used by themselves (in
the absence of the clinical criteria), because alone these measures do not satisfy the multiple
symptom domains that currently comprise the syndrome of ME/CFS.

 

[medfeb]

THank you, WIllowJ!!

 

[WillowJ]

on page 13, pacing is described as "adaptive coping". Good grief, I thought from the description of "adaptive coping" being responsible for most of the symptom variance, that they would be referencing a psych paper, but no, it's an energy envelope paper.

not staying in the energy envelope is "less adaptive coping".



Do you think we'll be allowed to keep pacing if we call it "adaptive coping" instead of "pacing"?

 

[beaker]

Not only is the system broken but, many would say the process is fixed purposefully to fail is. It is HHS/NIH who chose this process and are guiding it purposefully to harmfully minimize and marginalized this disease.

Many stakeholders feel that our inly viable option is to boycott these procedures and to try to block it. We ought to show how there is no legitimacy to a process that is doomed from the start.

I'm for a boycott AND protests that include insightful reasons why.

 

[WillowJ]

My point was to motivate people from outside the US that if they give feedback which means some useful points are made, this could be useful to achieve.

yes, is a good thought (and my original point, too).

Even if they don't change the actual review, there will be a document summarizing the points made, or at least the authors' responses to the points made.

Here is a Disposition of Comments report from AHRQ in another field (negative pressure wound therapy devices). Looks like all comments are included in the public record. Invited and "public" comments are separated into different tables, but they both appear.

 

[user9876]

That is exactly the problem with this type of evidence based paper review they are doing. They are using every criteria out there with such a broad definition, that it is the result is skewed from the get go. In addition, the review was done by people who have no experience with ME/CFS.

I think they just need to be analytic about it. Check that there is a published protocol and that result match. Think about methodology and what is being reported.

I've only had a very quick glance but my initial view is its not a very careful piece of work. They have searched a few papers and taken results at face value ignoring the high likelihood of spin.

I was also concerned about their meta analysis graphs particularly where they pull together sf36 results for chosen trials. But I will need to spend some time reading.

 

[Sean]

The original study protocol had two objective measures: monitoring total patient activity with actimeters; the six-minute walk test. These were listed as secondary measures, which pretty well defines the attitude of the authors. Dropping the actimeters, after they had been bought, out of concern for the trouble they were causing patients, was one gambit in dispensing with objective measures entirely. Allowing patients who declined before or after walk tests to be counted as participants without contributing any objective evidence of effectiveness was the second act. This has not changed the rhetoric of the study authors.

The whole thing was a classic bait-and-switch.

Just worth repeating.

 

[Sean]

The original study protocol had two objective measures: monitoring total patient activity with actimeters; the six-minute walk test.

Also the Self-Paced Step Test? Which has not been reported, best I can recall.

 

[user9876]

In the Key Questions, they ask about a) benefits and b) harms about treatments.

When it comes to diagnosis, they ask only about harms, not about benefits at all.

Why?

I would argue that the question is given a diagnosis what are p(harms) and amount of harm along with p(benefit) and amount of benefit vs given no diagnosis what are the p(harms) and amount of harm and p(benefit) and amont of benefit.

The problems dealing with the state or insurance companies without a diagnosis are clear hence there is a benefit to having a diagnosis. The harms may be doctors pushing patients too hard through GET leading to deteriation as reported in patient surveys but the benefits may be some treatment/pain relief etc. With no diagnosis however, those problems don't go away.

Another major (and life threatening) issue is that doctors can ignore other symptoms after a diagnosis. Hence miss other major disease (such as cancer). But without a diagnosis doctors have probably just marked a patient down as flakey so don't take symptoms seriously either.

I'm sure there are many more issues

 

[WillowJ]

Another major (and life threatening) issue is that doctors can ignore other symptoms after a diagnosis. Hence miss other major disease (such as cancer). But without a diagnosis doctors have probably just marked a patient down as flakey so don't take symptoms seriously either.

True. Both of these actually have happened to me personally.

Another benefit of diagnosis is that it's super stressful to be ill with no label and no cause offered. With a label comes a great relief, not only that the doctors can identify at least that there is a pattern to your symptoms, but also that there are others like you. Then you can read about it (using appropriate sources such as PubMed and sites that end in .org) and get support from other patients.

 

[Nielk]

Please see this new thread with statements from advocates Eileen Holderman and Jeannette Burmeister protesting the P2P and writing letters to HHS.

http://forums.phoenixrising.me/inde...ster-sending-letters-of-protest-to-hhs.32751/

 

[Dolphin]

Also the Self-Paced Step Test? Which has not been reported, best I can recall.

I think this is expected in the mediators and predictors paper that has been promised.

 

[Dolphin]

In the Key Questions, they ask about a) benefits and b) harms about treatments.

When it comes to diagnosis, they ask only about harms, not about benefits at all.

Why?

It would be interesting to know whether it is dealt like this in other conditions and if so, what sort of comments can be made.
For example, a study showing the prognosis is worse the longer it takes to get diagnosed would suggest a lack of diagnosis is more harmful than a diagnosis.