Discussion in 'General Advocacy Discussions' started by Andy, Dec 21, 2018.
I didn't think that this was very good at all.
I'm not going to pull out all the weaker bits, but thought I'd mention this bit from Shepherd:
I'm not sure about this. Is specialist support really helpful for most patients? I've not seen any evidence of this. Also, there isn't any good evidence of 'boom and bust' behaviour being a particular problem with ME/CFS patients. I think that "specialist advice early on from a physiotherapist or an occupational therapist" can often make things worse rather than being something that patients 'need'.
Oh dear. It's a confusing mix of one person's anecdotes about her own experience, which I would say is not particularly typical, and selective quotes from the MEA which are at times odd:
This sounds too much like GET to me. And some people have no alternative but to stay in bed. As far as I know there's no evidence that 'too much rest' is a real phenomenon in ME, let alone whether it's harmful.
And specialist physios and OT's are not the answer as far as I can see. Their particular fields of expertise are all geared to getting people to do more, rehabilitation etc. I doubt there are many of them in the UK who really understand the needs of pwME. We more often need to be helped to do less in order to stay within their energy envelope. Why not a specialist nurse to help with this? Why a physio or OT?
Anecdote. Not helpful and nonsensical explanation not based on science. I wasted a lot of money on reverse therapy until I came to my senses. It is rubbish. I suspect people who claim it has helped are those who happen to do it at a time when their symptoms are improving naturally anyway and like the feeling that something they have put effort into and paid a lot of money for has helped them. There is no research evidence to support it.
I'm not impressed with Patient, whatever it is, publishing this. I don't blame the writer who is simply doing her best to tell it as she has experienced it and understands it, but the publisher should check the facts before publishing, and not be content to publish an anecdote with a few quotes from the MEA. Nor should they publish it with the misleading heading 'The latest thinking on ME'.
I have just been exploring Patient a bit more. It has sections written for doctors. The ME/CFS section was last updated today, so it says.
I've glanced through the treatment section. It seems they are keen on reverse therapy too. I can't understand why.
What does this even mean? It's incomprehensible.
I suspect that she meant the plural, "axes". There is mention in the literature of assessing the symptoms on various different axes, though there never seemed much agreement about what the axes should be.
This I wholeheartedly agree with.
Ditto! This was my case.
More from Sally Turner:
And her blog: www dot sally-turner dot co dot uk
OK, so I haven't read all the article yet. However, I think the latest thinking on ME should be that it is characterized by acitivity induced pain, fatigue, and exacerbation of this diseases's other symptoms such as orthostatic intolerance.
Some, however well intentioned are missing the fact that many symptoms are exacerbated with activity, and fail to note these. ME is not just fatigue with activity.
The bit on autoimmunity is total drivel. As dumbed down as you can get. The ME piece is pretty unhelpful and one wonders why ignorant people who call themselves journalists feel the need to misinform others about things they do not understand themselves. Presumably because they get paid by the advertisers to write stuff.
As far as I can see Patient is a front for a commercial health company - presumably subcontracted to by NHS England. But it says remarkably little on the site that I can find that really tells you what the conflicts of interest are.
I didn’t think the autoimmune stuff could come from the mea. I also am not sure dr Shepherd would have spoken like that about CF. Key things to get the public to understand about ME versus CF, range of distressing symptoms, PEM and severity weren’t highlighted enough or at all. I thought dr Shepherd didn’t explain well enough they they use ME, using language on “going to bed and just staying there “ has to be done carefully as some of us are bedridden without choice and it wasn’t careful, and I agree regarding increasing activity and needing physios which would surely seem to an nhs professional virtually endorsing the current NHS approach. . .?
It’s a garbled mess and no way should she be pushing reverse therapy. It would be good if one of the Drs with ME could write or maybe co-write a proper article which could then be proposed to these sort of web outlets as accurate content.
I was referring to the other article by Sally Turner, who clearly knows nothing herself.
Edited to try to get the tweets in the right order.
I am a bit puzzled - Sally Turner seems to be the patient as well as the author. She has also written garbage about autoimmunity. I am highly suspicious of this set up 'Patient'. It looks like a commercial scam to me. I wouldn't be surprised if they provided 'Reverse Therapy'
Given this paragraph in their section for doctors, I think you may be right.
Sounds like someone is confusing having negative emotions with having ME/CFS and fibromyalgia.
Continuing the conversation:
Separate names with a comma.