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Treatment of ME-CFS: A Systematic Review for a NIH Pathways to Prevention Workshop

Amaya2014

Senior Member
Messages
215
Location
Columbus, GA
Thank you @Bob. This is all still new to me and I do find it important to understand history. Reading the response of Valentijn and the actual PACE report was a huge help. I was starting to think along the lines of what you wrote so your response is right on point for me.

For my own experience, I'd been active all my life and spent the last decade as a soldier and officer in the US Army. When this illnes hit, I was struggling to walk a .5 mile and it took me several months
to understand something had changed and I could no longer do what I'd trained to do all those years. I did become afraid of all activity. Mentally, it was helpful to find that I could ease into a gentle and therapeutic form of yoga but it was clear that my body would not allow me to do much more.

I am much better informed on GET now and appreciate your feedback.
 
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jimells

Senior Member
Messages
2,009
Location
northern Maine
For the most part everyone except Militant ME Patients will read the main trial paper only - psychobabblers know that - so relegating inconvenient outcomes to secondary papers published years later in low impact journals is the perfect way of hiding things in plain sight.

This is standard operating procedure throughout establishment "journalism". An outstanding example was the NY Times and others trumpeting the dangers of Iraq's "WMDs" in order to stampede the world into another war. The dear leaders got their war. It wasn't until much later that front-page lies were quietly retracted. Half of America probably still thinks that Saddam bombed the World Trade Towers.


They see what they want to see and hear what they want to hear.

... with just a little help from glasses and hearing aids provided by the disability insurers. Those connections were confirmed in the UK by a parliamentary committee report. As far as I know, those connections have yet to be documented in the US - mostly likely only because no one has really looked.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
The only way around this problem would be to insist on public pre-registration of all studies and insistence by journals to report ALL prespecified outcomes but that raises the question of how journals are going to change to accommodate this. Right now, editorial policies in medicine are lunacy. Papers have to be incredibly short and you simply cannot report everything in one paper, even as an honest person trying to do so, since you'd be over their word limit by 1000s of words. Journals would have to change dramatically to facilitate putting a stop to this selective reporting shenanigans.

The era of print journals with word limits is coming to an end. Journals like PLOS One have never had a word limit. It is true that reviewers don't like to read excessively long papers, but I think that exceptions can certainly made for high profile clinical trials and especially due to the fact that the scientific consensus necessitates reporting all of the measures.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Was this a larger issue there or have patients in US and Canada and other places having the same issue.

My experience in the US has been that half the doctors tell me I'm not sick and the other half tell me that they can't help me and they don't know who can. No one has ever used the terms "PEM" or "GET" or "CBT" because US physicians knowledge is so limited they don't know the terms.

Several have told me I just need exercise and therapy, but they never proposed any specific formal program. Of course, like you and so many others here, if exercise were the cure then I would have never gotten sick. Idiots.

So the hypothesis behind GET is that patients thought they were sick, were falsely convinced that exercise/work/activity was making it worse and "good medicine" was to show patients they could return to normal and eventually no longer need to claim sickness?

Yup. That is exactly right. We are afraid of exercise, so we're deconditioned, lazy, parasitic, and morally suspect. :mad:
 
Messages
15,786
So I think what you're saying is that patients were expected to stick to an exercise program of increasing intensity? Was this ignorance of PEM or more likely that most people didn't believe it was real? (I guess it could be both but if anyone has first hand experience please share)
Yes, traditionally the goal was to increase activity, without allowing any respite in reaction to symptoms. The advocates of GET and activity-oriented CBT knew that patients had more symptoms after exertion, so they were not ignorant of it.
Most of the research articles I've seen mentions UK. Was this a larger issue there or have patients in US and Canada and other places having the same issue.
It has primarily been an issue in the UK. A group of like-minded researchers emerged there, and generally fed off of each others' theories and work. The Netherlands has seen a similar problem, but it started more recently and there's much less public interest in it. This is probably largely due to the UK group being heavily oriented at spreading their message and very specifically targeting those in power. Wessely especially has been a charismatic force in the UK - he says a lot of godawful things, but he sounds quite charming while doing it.
Doctors or researchers really thought this exercise was going to cure patients?
Perhaps initially, but I think the researchers and self-proclaimed specialists promoting GET had to know better at some point. They would have been seeing massive rates of complete failure, even when using a diagnostic criteria only requiring fatigue. But other doctors and researchers who merely read their papers or abstracts, would likely take those claims at face value.
So the hypothesis behind GET is that patients thought they were sick, were falsely convinced that exercise/work/activity was making it worse and "good medicine" was to show patients they could return to normal and eventually no longer need to claim sickness?
Sort of. But that's not how GET came about. The Wessely school started with a basic premise about 20-25 years ago: illness-denial CBT is the cure. They worked backwards from there to try to explain how it worked, even when it wasn't actually working. Initially GET was incorporated into CBT with the explicit caveat that it worked because it was overcoming beliefs, not because it was resulting in any increased activity. In fact, the researchers said the amounts of exertion used were incapable of having any physiological impact.

But then that model was contradicted by physiological abnormalities found in ME/CFS patients, most specifically Orthostatic Intolerance. Plummeting blood pressure when standing up is obviously not the result of simply believing we are ill. Instead of scrapping the entire psychosomatic theory, they still maintained that CBT was ultimately the cure. But they refined their theory to state that our erroneous beliefs resulted in us becoming less active and deconditioned, thereby resulting in our more objective signs of illness. So GET became an even more important part of CBT, but now with the presumption that it was curing us by getting us to work our way out of our supposed deconditioning.

In the past 5-10 years, actometer data has proven that ME/CFS patients treated with CBT and/or GET do not become more active, even if they report significant improvement on questionnaires. So the new conclusion is that subjective reports of fatigue are the most important factor in determining illness and recovery. This ignores the objective disability experienced by patients, so they simply don't talk about that anymore. The image they try to create is that there is no substantial disability, and that our belief that we have symptoms is caused solely by our fear of activity. Of course, under this model CBT is still touted as the cure, with GET used to supposedly teach us that our presumed phobia is misplaced.

And in the past several years, at least three groups have produced studies showing that we have an objective reaction to exertion which is not present in sedentary/deconditioned controls. Deconditioned people might show mildly reduced capacity on a single Cardio-Pulmonary Exercise Test (CPET), but even moderate ME patients have a large reduction in their VO2max. Basically that means that they hit their physical limits much sooner than healthy or deconditioned controls. More interesting is that when even mild ME patients take a second CPET 24 hours after the first one, they have a dramatic decline in function. Healthy and deconditioned controls do about the same on both days, or slightly better on day 2. This objectively confirms the existence of PEM, and demonstrates that it is a biological reaction, not the result of maladaptive thoughts or behaviors.

Again, the psychosomatic proponents remain completely silent regarding the CPET. I have never seen one attempt to explain away the results seen in ME. It might even be a major factor behind some classic CFS psychobabblers jumping ship and abandoning CFS research, including Simon Wessely. Instead they ignore the CPET and the other growing sources of biological evidence, and focus on championing CBT and accusing patients of being biased against psychiatric illnesses if we dare object on any grounds.

Another possible shift, which they've shown tentative signs of in the past is claiming that even if a disease is proven biological, there is still a psychosomatic component. Basically they suggest that some symptoms are real, and others are imagined. To reach this conclusion, they use certain depression and anxiety questionnaires where physical disability and symptoms are presumed to indicate psychological dysfunction. They likely find this approach very appealing because it can be applied to any chronic illnesses, especially ones with the involvement of multiple biological systems and many diverse symptoms. And of course (say it with me): "CBT is the cure."

The one consistency in their forced evolution of their hypothesis is that CBT (with or without GET) is always the cure. From there they will work backward to try to prove how it is done, while employing various methods to dodge around the incontrovertible evidence of biological involvement. I think they're running out of ideas for how this can be plausibly explained, and many are running for the hills, leaving the much stupider ones behind to say increasingly absurd things about the disease which are easily disproven.
 
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Amaya2014

Senior Member
Messages
215
Location
Columbus, GA
Thank you very much. This is getting me up to speed.

Sadly, it's almost laughable. Strong emphasis on sadly and almost.

To me it sounds the equivalent of "have a cookie and call me in the morning" to treat a cold. Or, better yet, encouraging a diabetic to eat more sugar so the body will rebalance itself.

I'm a counselor and I wouldn't even consider CBT for someone with these complaints. The most I would do is provide supportive talk therapy along the lines of the grief process, maybe some solution focused therapy for specific problems, and advocacy as needed.
 

Amaya2014

Senior Member
Messages
215
Location
Columbus, GA
My experience in the US has been that half the doctors tell me I'm not sick and the other half tell me that they can't help me and they don't know who can. No one has ever used the terms "PEM" or "GET" or "CBT" because US physicians knowledge is so limited they don't know the terms.

Same here. Although I did have one session with a psychiatrist who decided I was having a Conversion disorder. I guess supposedly from a severely traumatic childhood. Where she got this idea I have no clue because in 45mins the conversation was mostly about how I'd been having physical and cognitive troubles for most of the year. Interestingly, she didn't recommend any treatment for my perceived issues.
 

Sidereal

Senior Member
Messages
4,856
I think that exceptions can certainly made for high profile clinical trials and especially due to the fact that the scientific consensus necessitates reporting all of the measures.

Well, PLoS is a different publishing model. In my post I was referring to traditional medical journals with good reputations that everyone wants to publish in. These are stuck in 1985. You are constantly being reminded to stick to what's typically 3,500-4,000 words + 5 Tables/Figures. Try reporting a trial in such a fashion; it's a nightmare, especially when you have to incorporate reviewers' (often idiotic) comments.

I would argue that it shouldn't be an exception for high profile papers, it should be the norm in an era of electronic journals. No one likes to read long papers but if we're going to have full transparency in clinical trials then we can't have a situation where you are threatened by editors that if you exceed their arbitrary word limit the paper will be rejected.
 

Sidereal

Senior Member
Messages
4,856
The traditional journals could easily publish a brief paper in their print version, and then place online a longer analysis, and any secondary outcomes, and a mass of data. It's a bit prehistoric not to utilise the internet in such a way.

Traditional journals do allow online supplements but it's not the same as an outcome being in the main paper. It won't get read or quoted by doctors or press.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I am wondering why there is no reference to the rituximab trial of 2011? Maybe there is a practical reason, but since this is the only treatment currently undergoing a major multicentre phase 3 trial as far as I know it seems a bit odd that there is no mention. If they considered the outcome negative that still does not figure, since they mention several negative studies. As it stands the piece looks to be incomplete.
 
Messages
13,774
I am wondering why there is no reference to the rituximab trial of 2011? Maybe there is a practical reason, but since this is the only treatment currently undergoing a major multicentre phase 3 trial as far as I know it seems a bit odd that there is no mention. If they considered the outcome negative that still does not figure, since they mention several negative studies. As it stands the piece looks to be incomplete.

I think that there was some weird reason - that the follow-up duration [ta sidereal] was not long enough? I know a few people planned to challenge this in their responses to the draft, but from looking at the review author's responses to comments it didn't look like they were too interested in thinking again. (This is just from memory of stuff from November).
 
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Sidereal

Senior Member
Messages
4,856
Rituximab is included in the paper. Reference 58.

Additional trials enrolling fewer than 30 participants and with durations less than 12 weeks indicated no statistically significant differences compared with placebo for acyclovir (57) and showed improved 36-item Short-Form Survey (SF-36) scores for physical health and function with rituximab (58).

Yes, the insane absurdity of including only treatment trials of at least 12 weeks' duration. They don't understand that some drugs like rituximab are not administered continuously for 12 weeks. This already caused a huge furore on the threads about the draft version of this nonsense. As I understand it they caved in and did a secondary search which then included Ampligen and rituximab.
 

Sidereal

Senior Member
Messages
4,856
I think that there was some weird reason - that the follow-up was not long enough? I know a few people planned to challenge this in their responses to the draft, but from looking at the review author's responses to comments it didn't look like they were too interested in thinking again. (This is just from memory of stuff from November).

It was challenged in the public responses to the draft.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Rituximab is included in the paper. Reference 58.

Additional trials enrolling fewer than 30 participants and with durations less than 12 weeks indicated no statistically significant differences compared with placebo for acyclovir (57) and showed improved 36-item Short-Form Survey (SF-36) scores for physical health and function with rituximab (58).

Yes, the insane absurdity of including only treatment trials of at least 12 weeks' duration. They don't understand that some drugs like rituximab are not administered continuously for 12 weeks. This already caused a huge furore on the threads about the draft version of this nonsense. As I understand it they caved in and did a secondary search which then included Ampligen and rituximab.

Particularly weird since the rituximab trial had 30 participants and was followed up for six months and more although the primary end point was 12 weeks. Funny how those figures seem to match (or mismatch)!!
 

Sidereal

Senior Member
Messages
4,856
Particularly weird since the rituximab trial had 30 participants and was followed up for six months and more although the primary end point was 12 weeks. Funny how those figures seem to match (or mismatch)!!

To clarify - their search criteria stated that the treatment itself had to be of at least 12 weeks' duration, as in, the drug had to be administered for over 12 weeks. It's not the length of follow-up in the rituximab study they had a problem with. Really, you couldn't make this stuff up!
 

Dolphin

Senior Member
Messages
17,567
Note the Work and Social Adjustment Scale (WSAS) was used to measure employment measures. Some people pointed out in the comments on the draft that this was not a good measure esp. when actual employment measures were used, but they ignored this:


Here are the questions on the WSAS:

Please read each of the following questions and tick the appropriate box to indicate

No impairment Severe impairment
0 1 2 3 4 5 6 7 8

Because of my CFS/ME, my ability to work is Impaired.

Because of my CFS/ME, my social leisure activities (with other people, such as parties, bars, clubs, outings. visits, dating, home entertainment) are impaired.

Because of my CFS/ME, my home management (cleaning, tidying, shopping, cooking, looking after home or children,
paying bills) is impaired.

Because of my CFS/ME, my private leisure activities (done alone, such as reading, gardening. collecting, sewing, walking alone) are impaired.

Because of my CFS/ME, my ability to form and maintain close relationshipswith others, including those I live with, is impaired.
 

Dolphin

Senior Member
Messages
17,567
Abstract said:
Counseling therapies and graded exercise therapy compared with no treatment, relaxation, or support improved fatigue, function, global improvement, and work impairment in some trials; counseling therapies also improved quality of life (low to moderate strength of evidence).
Despite what it might seem, these are all subjective measures. Function = scores on questionnaires; similarly global improvement and work impairment (see last comment for the WSAS scale they used for work impairment).