I think there are some very, very good points in this thread, which I hope the MEA address, but sometimes with a dose of hurtful feeling against the MEA that depends on there being MEA bad faith. I don't think that underlying tone is fair IMHO. I think demonising them doesn't engender anything positive.
Okay, this is problematic.
Only a "small number" of GPs still have unhelpful attitudes towards ME? Oh please. The vast majority of them promote GET/CBT.
Why are the MEA encouraging us to seek management in line with the current NICE guidelines?
Why are the MEA encouraging us to seek referral to ME/CFS services which will try to get us to do GET and CBT?
The MEA's position is underwritten by good faith overoptimisim, because it assumes that many medics or fatigue services have their Purple Book or have equivalent knowledge. And it errs on the side of professional decorum, which is both tactically prudent and naïve at the same time - depends on the individual specifics of our shitty contexts. The cake can't eaten and had, so they should rebalance more towards breaking some eggs and making the omelette.
I see their reference to "unhelpful or hostile attitudes" as professional wording. While I may curse and swear about such medics privately, I would remain professional in professional output if I have to engage with some of them and need their buy-in.
Whatever we can say, my understanding is that the MEA were absolutely consistent throughout the decades in their position on GET and CBT, regardless of the pressures. However fallible any org is or feedback that is necessary, supporting PACE paradigms isn't a criticism we can make.
Erm. No. I have never heard a single person with ME/CFS say that it enabled them to spend more time with their family. If you're sick enough to be unable to work, then you're generally also sick enough to be limited in how much time you can spend with your family.
I say it all the time. My assumption is that many people of working age who are no longer engaged in onerous careers probably feel the same way. Put otherwise, at least I get to see my spouse's and children's faces more than I ever would. There are other pluses that I try to remind myself of, even just that I get to listen to podcasts. Sure, it's crappy, but at least...
I totally understand that this will not apply to everyone, but it is not irresponsible to encourage people to find whatever silver linings are available, if available. It is responsible IMHO.
The problem is the loaded word "gain". It would not be so loaded if relevant professionals and society were all properly informed. The word "gain" is very wrong because of our context.
I'm not even surprised by any of this. I have no faith in the MEA.
They, like AFME, are trying to keep both PWME and The Establishment happy. Which uh... isn't really possible.
Frankly, I despise what I hold A4ME did to me. I don't see the MEA or CS as doing anything other than remaining in the game. Unless you are literally going to stage an insurrection and sieze control or impose change physically, it remains absolutely critical to have a medic who remains unimpunable in medical and medical-media circles. The alternative is analagous to revolutionaries refusing to see any merit in electoral politics - fine if you do get the chance to storm the palace, but even the Bolsheviks couldn't pull that off and had to sieze power after others brought everything down.
However difficult it may be to get that balance correct all the time, a stressful strategy I'm sure, Charles Shepherd is maybe one of the most media covered medics on the planet on the topic of ME, a role that has been fundamental to my ability to survive Vs family and medics. His life's work has helped me and many others who will never have a voice.
I'm sure he'd never claim infallibility, but the assault he often gets can be brutally unfair and cruel. A person with ME who has dedicated himself to us. I also wouldn't expect him to engage everyone or every issue on Facebook. He probably does engage on FB more than any other ME 'thought leader' from what I've seen.
I think they should say much more firmly that there is not evidence that GET works, and plenty of evidence it's harmful.
In that document, yes. Their other publications all make the Workwell case and they have always been against it, unless I've missed something.
I'm concerned at how trusting they are that NHS clinics can be helpful, without sufficient warning that patients can be pressured or talked into believing the therapist knows best.
Very agreed. It's too optimistic that their message and Purple Book are widely held. That would also assume that NICE guidelines are being ignored by NHS Fatigue Services, which by definition they can't be.
ME also causes splits in families, and inability to form new families, which can be devastating.
This, and worse. Much, much worse. Sadly.
any type of "gain" is inappropriate and a dangerous path to go down.
That comment about gains is offensive. Considering the number of patients driven to suicide in isolation it is deeply so.
It is a very, very bad choice of word, but I still hold on the idea above that it is positive to find silver linings in any situation.
what happened to their 'Real ME Photo Campaign'?
This
The next section says most PWME should be managed by a GP. But why? Most GPs have no expertise in the field.
It's my above point about overoptimisim again. The MEA have to consistently treat the world as they find it, not as if it is even partially how we'd want it.
The irony is that the MEA has been described by people like Chris Burton as a hotbed of mad militants.
Exactly. And yet there can can vitriol that I think is unfair.
I think if I was someone who had recently developed ME/CFS I would find it confusing..... I think it is very easy for patients and carers to feel intimidated and guilty when faced with a health care system that has completely collapsed for a lot of chronic illnesses.
Powerful points not made often enough.
Even when CFS services are led by immunologists, they still appear to deliver CBT/GET and little else.
The Dorset CFS service is led by a consultant rheumatologist - what does it offer:
https://www.dorsetccg.nhs.uk/Downloads/aboutus/finance/02_GMS_0011 ME formerly Chronic Fatigue/02_GMS_0011 ME formally Chronic Fatigue.pdf
f) Offer management options including, as appropriate:
cognitive behavioural therapy
graded exercise therapy
activity management
sleep management
rest and relaxation
diet
(...)
In addition to past published research studies the Dorset CFS/ME service has continued collaborating with Clare McDermott, Research Fellow in Primary Medical Care at University of Southampton with the aim of taking the
Fatigue Management treatment approach forward and combining this with strategies and insights derived from the experiences of recovered and recovering patients; communication tools taken from Neuro-Linguistic Programming (NLP) to make therapy more accessible for patients, and to maximise cost effectiveness.
and has links with U of Bournemouth "Emotional Processing" research.
They just can't operate any other way as they are NICE governed by definition. Witness Dr Bansal at St Heliers hospital being kept in a clinical cage and having to go private.
