Or for a trip back to the dark agesYes, thanks. Just been onto the website to bring myself up to date.
Or for a trip back to the dark agesYes, thanks. Just been onto the website to bring myself up to date.
Thank you @Trish. Do you think they would willingly circulate something so critical of their own publication?Another excellent article, @Naomi10, thank you. You are so good at focusing on the essential points very clearly. I hope you will send all 3 article to BACME and ask for them to circulate it to all their members. All therapists treating pwME should read them.
There seems to be a belief that GET helps some and therefore is relevant.Excellent article @Naomi10, really good.
I cannot get my head round how any ME charity these days can still be peddling this cr*p. Do they really have no scruples? No common sense? No basic humanity? Suspect the answer to all of these is: BPS. There is obviously a lot of BPS influence from within BACME, but I'm sure there will be a lot from without as well - strings being pulled.
Thank you @Trish. Do you think they would willingly circulate something so critical of their own publication?
Another excellent article, @Naomi10, thank you. You are so good at focusing on the essential points very clearly. I hope you will send all 3 article to BACME and ask for them to circulate it to all their members. All therapists treating pwME should read them.
No, but it would be interesting to see them try to explain why they wouldn't - especially if you made it clear you would make your request and their reply public! Depends how far you want to push.
BACME is a lobby group.Excellent article @Naomi10, really good.
I cannot get my head round how any ME charity these days can still be peddling this cr*p. Do they really have no scruples? No common sense? No basic humanity? Suspect the answer to all of these is: BPS. There is obviously a lot of BPS influence from within BACME, but I'm sure there will be a lot from without as well - strings being pulled.
This is just conjecture on my part and nothing more. I suspect that once the truth is finally unravelled about what ME is and is not, it may turn out that some people will not in fact be harmed by gently progressive exercise, even though many others can be. If so, and if people could be safely tested beforehand to know which group they were in, then harm could be avoided to those at risk of it.There seems to be a belief that GET helps some and therefore is relevant.
I think diagnosis is a huge issue.
@Sly Saint, I’m really glad you drew my attention to it. My online time is very limited and I miss a lot of things. The guidelines had passed me by, but as soon as I read them I felt I wanted to write about them.@Naomi10 thanks for 'taking up the challenge on this'. I was a bit worried about asking you but am very glad that you have done it.
Excellent. You have a way of getting beneath the gloss.The guidelines had passed me by, but as soon as I read them I felt I wanted to write about them.
From workwell , ( and myhill) it is the type of exercise when someone is mild. GET is simply the completely wrong approach.This is just conjecture on my part and nothing more. I suspect that once the truth is finally unravelled about what ME is and is not, it may turn out that some people will not in fact be harmed by gently progressive exercise, even though many others can be. If so, and if people could be safely tested beforehand to know which group they were in, then harm could be avoided to those at risk of it.
But we are nowhere near that point yet, if it even exists at all. But these people operate as if they have some divine insight, divine right. Or maybe they are just b****y stupid.
Too confident in their own cleverness.
I think a distinction needs to be made between exercise and graded exercise. In some cases, gentle exercise can be of benefit provided it is within the person’s safe limits. The very nature of graded exercise, however, is that those safe limits are constantly challenged and any warning symptoms ignored. For anyone with ME, such an approach will be detrimental.This is just conjecture on my part and nothing more. I suspect that once the truth is finally unravelled about what ME is and is not, it may turn out that some people will not in fact be harmed by gently progressive exercise, even though many others can be. If so, and if people could be safely tested beforehand to know which group they were in, then harm could be avoided to those at risk of it.
But we are nowhere near that point yet, if it even exists at all. But these people operate as if they have some divine insight, divine right. Or maybe they are just b****y stupid.
Too confident in their own cleverness.
From workwell , ( and myhill) it is the type of exercise when someone is mild. GET is simply the completely wrong approach.
Yes. And if the latter, the exercise may still be inflicting invisible damage that will likely become visible only once it is too late to turn back.If some patients can improve on gentle or graded exercise it can only mean one of two things - they do not have ME which is always possible because of misdiagnosis and because CFS is used for simple idiopathic fatigue without characteristic ME symptoms or the exercise is being done by people who have an aerobic system which is still quite efficient even if damaged.
Yes. And if the latter, the exercise may still be inflicting invisible damage that will likely become visible only once it is too late to turn back.
It is akin to so many natural processes, including things like climate change, which itself is a highly complex set of interactions between many deeply nested subsystems, each with its own delays and nonlinearities (and thereby impossible to theoretically predict no matter how clever some may think they are). By the time symptoms have become severe enough to convince the doubters that interventions really are causing a problem, it can be way way too late, because the the effects are still rolling through the system from interventions being made in the past. The tipping point into harm may not yet be evident at the output, but may already be committed to and irreversible due to inputs already applied.A very important point. Until we know more about the mechanism and can measure what is going on underneath, there is no way that pushing exercise beyond what feels comfortable should be a treatment.
Great writing Naomi, thank you for spending precious energy on this.Thanks for sharing @Eagles.
Once again, each section contains a summary at the end, for those unable to read the full text.
Please note that it is not necessary to have read the previous parts before reading this one.
Some quotes from Part 3:
“Speaking from a personal perspective, I have been aware of the effects of deconditioning in my own illness. But having progressed from being close to death to the more active place where I am now, I can confidently say that deconditioning and the symptoms of severe ME are very, very different entities.”
“Trying to create healing through sensory exposure - or any form of activity - is absurd at best, and dangerous at worst. It is akin to believing that because healing a broken leg allows a return to playing sport, a return to playing sport must therefore heal a broken leg.”
“Professionals properly trained in treating severe ME would make an immeasurable difference to the lives of many. BACME have missed a vital opportunity to support this.”