Action for ME have "reworked our treatment and symptom management page" and "updated our pages on GET and CBT"

[Sisyphus]

I know this is a terribly unpopular opinion here, but this has been my experience, at least in the US.
(Though when we say alternative and complementary medicine we are not referencing psychology or psychiatry.)

Without complementary medicine I may never have even got a diagnosis, much less any relief from the myriad sufferings of this
disease complex.

People are an odd bunch. Once in a while you find a thief with more honor than the average joe, especially when most of society as a bad lot. But usually not.

Alt med means absolutely anything that you want to package and sell as medicine, which may occasionally include actual medicine.

We are in an odd spot, as for quite some time, the powers that be declared that we don’t exist. Ramsey discovered something important, poltiticizers picked up brooms to sweep it away as that was their only real talent.
Over the last half century there’s been a slow creeping bureaucratization, cronyfication, and politicization of many areas of society. Those are not improvements.

Sorry, this is disjointed. I seem to of lost whatever minimal ability in writing that I previously had.

 

[BruceInOz]

It's a sad reflection of the state of mainstream medical care for CFS that some patients do find alternative practitioners to be better (or at least, less bad)!

It's rather like the way that Homeopathy gained a following because it didn't do as much harm as much of conventional medicine did in the 19th century.

 

[NelliePledge]

there are things I do that fall squarely into complementary medicine I don't object to it in principle I think the wording about practitioners being competent ethical and caring is unnecessarily positive. It is good that the message around harms is clearly articulated and up front on that page. It should be equally up front on the CBT/GET page.

 

[sea]

Who the hell is funding AfME?? Surely not patients???? I am relatively new to the scene but I am learning....but I am confused as to where they are getting their funding from?

If it’s anything like ME/CFS in Australia there are a multitude of patients with the diagnosis who probably better fit a chronic fatigue state. These people are enamoured with stress and depression as a cause and exercise and mindfulness as a cure-all. I regularly join and then leave the Australian ME/CFS group on Facebook when I can’t endure it any more.

 

[Sunshine3]

If it’s anything like ME/CFS in Australia there are a multitude of patients with the diagnosis who probably better fit a chronic fatigue state. These people are enamoured with stress and depression as a cause and exercise and mindfulness as a cure-all. I regularly join and then leave the Australian ME/CFS group on Facebook when I can’t endure it any more.

Oh God, I can imagine....painful!!

 

[TiredSam]

yes if you look at their website they have a post every week - fundraiser of the week!!!!

This is actually quite a clever marketing tactics and would appeal to a certain kind of person.

Yes, it appeals to the type A personality. And we all know how many of them have ME.

"What about alternative and holistic therapies?
Many people with M.E. try different approaches to help them manage their illness and their symptoms. Most alternative and complementary therapists are competent, ethical and caring.

Provided there is no evidence of harm, Action for M.E. adopts an open-minded approach to complementary therapies, on the basis that people with M.E. report that different approaches do help some people."

Most alternative and complementary therapists are competent, ethical and caring

What part of AfME's expertise (if we accept that they have any, for the sake of argument) allows them to make a statement like that? Have they done a customer satisfaction survey? Have they checked whether those who speak well of complementary therapists over-report and exaggerate what they think helped and neglect to mention everything that didn't? It's just an unfounded opinion plucked from thin air. And even if it's true, what use is it to me that the therapist is a lovely person who's very good at what they do (swinging chrystals, channeling 'energy', sticking candles in my ear ...) if what they are doing is wasting my limited time and money?

Action for M.E. adopts an open-minded approach to complementary therapies

Action for M.E. adopts an uncritical approach to complementary therapies and regards this as a service to their members.

on the basis that people with M.E. report that different approaches do help some people.

Well on that basis if thousands of people with M.E. report that GET ruins the health of some a lot of people would you mind adopting an open-minded approach to that and start warning all sufferers (including 'mild') that it could seriously harm them?

 

[Sly Saint]

Has the Countess of Mar been shown any of this, and the leaflets (ie on pacing, and the employers guide, and 'toolkit for professionals' etc)?