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

No worries but if you are able to someday that would be cool

 

Underwhelming

 

Huh?? That sounds bizarre. You'd imagine any ME patient would run for the hills upon hearing that!

 

I thought that their CBT/GET sections were improved, and I want to recognise that even while complaining about the problems that remain, and Action for ME's really shameful failure to apologise for their role in the PACE trial.

Of their current pages, I found the CAM one the most infuriating:

"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? That sounds like complete bullshit to me, and I'm worried by the mentality that could lead to someone writing such a thing.

 

Is that a suggested edit for them?

 

I am just going to say I told you so, on the subject of AfME. All that rubbish when they came here claiming to engage with people was utter bollocks and see through.

To be frank I cant believe anyone believed that what they were doing here was engaging.

I told you so!!!!

 

This is actually quite a clever marketing tactics and would appeal to a certain kind of person. I had a quick look and they don't seem to have a new person every week, at least one is there twice. So maybe not so much support from patients.

 

I also mentioned the issues but many argued with me that i was the closed minded one...
I'm sure acknowledgement is forthcoming

 

I contacted them about it 3 years ago and they said they were looking to re-do it.......hmmm.

Also (as I've posted elsewhere) it's interesting that on the main NHS choices site the MEA is the only charity linked to :
"ME Association is a charity that provides information, support and practical advice for people affected by the condition. You can find a local support group on their website."

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

whereas on most of the sites where they offer 'CFS/ME services' eg North Bristol

"
Websites
Action for ME www.actionforme.org.uk
Action for ME’s website provides lots of information about CFS/ME including advice about benefits, welfare and employment rights, local resources, and information booklets you can download.

The Association of Young People with ME (AYME) www.ayme.org.uk
The Association of Young People with ME (AYME) is a UK charity that provides support for children and young people aged up to 26 who have CFS/ME. AYME offers help and support parents, carers and professionals in health, education and social care.
This site shares some of the wide range of information and experience AYME have available, including features on health, education and real life accounts from young people with CFS/ME. AYME run a members-only message board, where members can talk to each other online. If you are a young person in the UK who has ME/CFS, joining AYME is free."

it also says:
*Links checked 8/1/2016 ...........


In Sussex
"
More information
AYME (Association for Young People with ME, up to age 26 years)
Sussex & Kent ME/CFS Society
reMEmber - The Chronic Fatigue Society "

https://www.sussexcommunity.nhs.uk/services/servicedetails.htm?directoryID=16292

the link to AYME now goes here:

"
This page has been reserved for future use"

maybe AfME should have informed someone of the changes?

 

Come come everyone, we all know they've been very busy being in Geneva. I expect the AfME office fridge is full to bursting with swiss chocolate now.

I think the CBT/GET bit is a little better than it was, as Esther 12 says. Otherwise I think there's too much prevaricating on some sort of imaginary fence.

 

It is bullshit.

And the ones not included are outright crooks.

 

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.

 

I know someone quite well who is an example of "competent, ethical and caring". He became a naturopath and practised for five years. Eventually his conscience got to him and he retrained as a lawyer and is now a legal aid barrister actually doing something ethical and caring.

He told me that most people came to him needing to talk about their bad marriages, sad lives etc. His conscience wouldn't allow him to make money out of their existential suffering so he would listen to their stories and 'prescribe' some magnesium. Needless to say, his business didn't flourish!

 

I feel that even if someone comes across as ethical, competent and caring, if the information that they're providing to patients is based on pseudo-science, then they're not really competent, ethical and caring. 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)!