Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Is Nigel Speight really the only doctor to have apologised for the appalling treatment that ME sufferers have received? I hope not.
"What is the current thinking/evidence on abnormal muscle function in ME?
I'd love to believe the "it's just deconditioning" hypothesis, but my muscles now respond to exercise and to increases in exercise so differently from how they used to when I was training for a half marathon before I got ME."
Reply:
"There is evidence of weak muscles, deconditioning, reduced heart size, and a reduction in mitochondria (a component of cells associated with energy).
However, once scientific studies have taken into account deconditioning and abnormal perception of effort, muscle function is in fact normal.
I also agree that it’s ‘not just deconditioning’. Graded Exercise Therapy (GET) appears to work for people not because it’s reversing deconditioning, but because it’s changing the perception of effort.
The most scientifically convincing explanation is therefore not to do with any particular muscle abnormality, but rather an abnormality in the perception of the post-exertional fatigue, malaise or pain.
This is a complex interplay that involves muscles, nerves, and the brain so can’t realistically be put down to one thing.
I also wonder if the frustration (or downright stress) of not being able to do what one could before also amplifies the perception?
I hope this gives you reassurance that you are right: the answer is not straight forward, and is a complex interplay between various body systems.
All the best with your health."
Jessica Bavinton
Founder Director Vitality360 Limited & Specialist Physiotherapist
BSc (Hons) Physiotherapy, MCSP, PVRA, HG (Dip), MBACME
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 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 must admit that I was concerned with this reply:
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
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.One week isn't long enough. A few important threads on GET have been closed down for no apparent reason.
Yeah, they get a bit cranky when patients try to provide too much factual scientific data.Just for the record, the following thread was created in the "physical activity & exercise" section but has since been locked and moved to the "research & funding" section without an answer:
Does GET actually improve activity levels?
Post by Valentijn on Sat Aug 17, 2013 3:02 pm
An expert here is saying that GET results in improvement. But I haven't read any studies showing any improvement at all in physical activity levels in patients undergoing GET. In fact, the studies using actometers (Wiborg, et al) show there is no increase in activity levels, even though patients say they feel better.
So I'm very confused about this - is there some research that I have missed out on, which supports the belief that GET results in greater functionality? Or is the perception of fatigue the only thing that matters when it comes to being treated with GET?
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."
http://www.talkhealthpartnership.com/forum/viewtopic.php?f=451&t=4753#p13847
So perhaps the thread I started on activity levels and CBT/GET has "reached a natural conclusion" i.e. no answer?
"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."
"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."
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.'
research & funding
Sorry but our panel of experts are unable to answer questions that are in regard to funding or research matters, or a complaint against the NHS. These questions need to be addressed to your local GPC (General Practitioner Council).