Discussion in 'General ME/CFS News' started by Firestormm, Jul 10, 2013.
The clinic is now open.
Dr. Jose Montoya has said we deserve an apology.
Right. Well. This clinic is attracting far more questions and dare I say it 'popularity' than I thought it would that's for sure. Dr Shepherd was saying on Facebook how many hours he has been taking answering questions.
The medical ones seem to be pretty good I thought. However, Facebook is played host to expressions of great concern relating mainly to the replies received in relation to 'exercise' and GET from other/certain members of the panel.
I must admit that I was concerned with this reply:
You may have to be registered to view the link above.
Not that I have been following yesterday - but there were a heck of a lot more posts on the medical thread than there were the day before when I just looked.
Some excellent replies - respectful but citing the research.
I chipped in to ask about the basic statement that GET is effective, using the Wiborg study to show a lack of connection between CBT/GET and improved physical functioning.
I suspect that site is going to end up being a tool for ME patients to educate medical practitioners, rather than the other way around
What to make of the sheer volume of posts on the medical thread compared to the exercise one? Hmmm...
Jeez, some of the ignorance there is mind-boggling. "My son with ME/CFS is having convulsions. What's up with that?" Response: "He should get psychological support!"
Actual thread is at http://www.talkhealthpartnership.com/forum/viewtopic.php?f=492&t=4610
although TBH I am more surprised when a health professional says something sensible about ME than when they talk testicles or bovine excrement!
The person who commented about sufferers dying made a good point, although the psyching of physical illnesses isn't unique to ME. My first attack of severe hyponatraemia was dismissed as psychological. It wasn't until 3 years later when I had another attack and managed to get taken to hospital that I found that it was near life-threatening.
One week isn't long enough. A few important threads on GET have been closed down for no apparent reason.
Yeah, that was a bit weird ... I had asked a question in one of them, someone answered, and then it was immediately closed so that no one could respond. Which is quite silly, since the responses usually include advice and such which might or might not be applicable to the situation, hence the question-asker often needs to reply to clarify the situation.
It really just looks like the "expert" in the exercise section is realizing how wrong and poorly founded her advice is, so is shutting down threads before anyone can say "Yes, I did all that, so why did GET make me worse or not work for me? What am I still doing wrong?"
The pediatric sections are just as bad (maybe worse), but at least the adult medical section (Dr Shepherd) seems to be pretty good. The diet section isn't bad for questions about dealing with physical limitations, but basically the usual "eat a healthy balanced diet" line is quite useless, and the general advice to AVOID THE UNPROVEN SUPPLEMENTS!!! and AVOID COMPLICATED DIETS!!!!! is likely to be more harmful than helpful.
There was something I had heard about the forum moderators closing off threads once they felt the question had been answered by the expert.
It had to do with making these questions and answers available to others - as some sort of reference - once the clinic had closed. I think they link NHS Choices to the closed Q&A or something; but I'm not entirely sure.
So that might explain why a thread gets closed - but is still not very helpful if people are being prompted to ask more questions by the expert's reply, is it?
Seems very odd way to operate a forum.
N.B. For those watching from the Facebook ME Alliance. Your threads are open to public view and I don't have a 'false name' that I use on Facebook only my real one.
On forums I go by Firestormm but most will know who I am: Russell John Fleming. I asked to be removed from your group some time back, which Michael arranged.
The ME Association Facebook thread is another place that is reflecting some some of the criticisms pertaining to the clinic and to certain answers being given by the experts.
Have a nice day.
Just for the record, the following thread was created in the "physical activity & exercise" section but has since been locked and relegated to the "research & funding" section (which do not get answered?) without an answer:
Where is the evidence that CBT/GET increase activity levels?
Post by biophile.pr on Fri Aug 16, 2013 10:20 am
ME/CFS leads to significant impairments and reductions in a range of activities. 
The underlying rationale of CBT and GET for CFS hypothesizes that these reductions are predominately maintained by cognitive and behavioural factors. Therapy challenges the supposedly maladaptive belief that activity is harmful, and encourages a gradual increase in patients' activity levels. 
Promotion of these "rehabilitative" therapies commonly implies or presumes there is good evidence that patients are actually managing to increase their total activity levels substantially, that it is completely safe to do so gradually, and that patients were clearly wrong to fear it in the first place.
However, the evidence from the PACE Trial and similar studies suggests otherwise.
PACE demonstrated a Number Needed to Treat of 1 in 7 to report a (post-hoc weakened definition of) "clinically useful difference" e.g. ≥ 2/33 points in fatigue and 8/100 points in physical function, due to receiving CBT or GET adjunctive to the generic "specialist medical care" provided to all participants.  Strictly speaking, the Chalder fatigue scale is not a direct measure of total activity levels, nor is the physical function subscale of the SF-36 health survey which measures self-reported impairments.
The threshold for a "normal" physical function outcome in the PACE Trial was regarded as "significant disability" in the trial eligibility criteria and is what other CBT/GET researchers have described as reflective of significant or even "severe" disability/problems. 
Furthermore, there was no (statistically and/or clinically) significant improvements to the already poor six-minute walking test distances (not a direct measure of total activity levels) , total service usage/costs, sickness-related benefits, employment losses, unemployment benefits, or medical insurance payouts. 
One (albeit imperfect) method for detecting total physical activity levels is the actometer, a small watch-sized device. Data from multiple European studies, on a style of CBT which includes GET, demonstrated no therapeutic increases to objectively measured reductions in physical activity levels, despite self-reported improvements.  This discrepancy between measures is particularly noteworthy for the non-blinded trials which make up the evidence-base for CBT and GET, including PACE.
So if CBT and GET on average do not actually increase total activity levels or increase engagement in other normal life activities, why is it still being promoted as doing so, and is this not encouraging false expectations about prognosis and the nature of improvements attributed to CBT/GET?
Adverse effects with CBT and GET have commonly been reported in patient surveys, and reporting of adverse effects in RCTs of these therapies were generally rather poor before the PACE Trial , which demonstrated that it is relatively safe (when safety means it is OK to experience a few weeks of PEM at a time after exercise) to carefully encourage broadly-defined CFS patients to gradually increase activity.
But it is this careful encouragement which appears to be "safe", not increases in total activity levels per se. So although there is something about CBT/GET which apparently helps a small minority of patients report less severe symptoms on questionnaires, claiming that CBT/GET increases total activity levels would not only go beyond the available evidence but even contradict it.
In a recent study on the positive and negative experiences of these therapies, the positive experiences were associated with sensitive delivery of therapy rather than substantial increases in function, and the negative experiences were associated with insensitive delivery of therapy. 
Is it therefore possible that the safety of these therapies depends not just on avoiding pushing too hard too fast i.e. so-called "boom-bust", but also on avoiding significant increases in total activity levels, because patients were generally correct about an activity ceiling hindering functional rehabilitation? Even if the occasional patient manages to become somewhat fitter or more physically active, there is still the risk of activity substitution, where these increases come at the cost of other more important activities.
Yeah, they get a bit cranky when patients try to provide too much factual scientific data.
I've tried asking the question AGAIN (3rd time), but keeping it very brief and keeping it phrased as a question: http://www.talkhealthpartnership.com/forum/viewtopic.php?f=490&t=4755
Someone asked why threads are being closed down so readily, and this was the response from the moderator:
"Threads are now being slowly closed once an expert has answered them and / or they have reached a natural conclusion. We normally don't close threads, but due to the large number of questions, we are closing topics to make it easier for the expert panel to identify which questions still may require attention."
So perhaps the thread I started on activity levels and CBT/GET has "reached a natural conclusion" i.e. no answer?
Obviously it couldn't be any kind of censorship, could it...?
I like both your and Valentijn's messages there. So calm and reasonable. Maybe that throws them a bit, as you don't conform to the scary mad stereotype that psychoquacks and their fans in the media keep perpetuating.
I keep respecting Shepherd more.
I think that he does a really good job of a difficult difficult job. I often have unusual priorities, so am unlikely to find a mainstream patient group that does exactly what I want, but I think that MEA does a good job for the typical patient.
lol. My partner pointed out how Orwellian that sounded - 'We're not preventing you from challenging the claims made, it's just that we have determined the discussion had reached it's natural conclusion. The Expert had answered for you.'
Maybe the psychiatrists and the physiotherapist "experts" will get together and perform the Toran Ra to discover the answers to the more difficult questions eventually
It seems to be an alternative version of the unilateral declaration that "This correspondence is now closed", which I and others had from academics at my own uni when we asked awkward questions.
Or the Dean of the faculty simply does a disappearing act...
It really is ridiculous that Biophile's question was locked and moved.
So does this mean that their experts are unable to answer questions in regard to evidence generally? That's the only way I could see them justifying the move.
You can also try a Google Site Search
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