Alvin
Senior Member (Voting Rights)
No worries but if you are able to someday that would be cool
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New Forum Software Installed (Still a few issues but reopening the forum) More details.
Action for ME have "reworked our treatment and symptom management page" and "updated our pages on GET and CBT"
Huh?? That sounds bizarre. You'd imagine any ME patient would run for the hills upon hearing that!Sadly, yes. I have spoken to AfME members who ME patients and they seem outraged at the the whole CBT/GET/BPS business.
When you point out the role AfME play, I 've gotten the "oh, I can't be bothered with the politics" response.
Esther12
Senior Member (Voting Rights)
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.
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.
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I hadn't got as far as that.
Having been one briefly, I dispute that. I'd say most alt and comp therapists have a shaky grasp on how the body works, let alone being able competently to diagnose anything, and no idea whether their treatments actually achieving anything.
Competence in something that is useless or even harmful is no use to anyone. Fancy some LP anyone? And don't get me started on the 'caring' aromatherapist who told me I wasn't getting better because I didn't really want to get better.
Barry
Senior Member (Voting Rights)
Is that a suggested edit for them?
also if you've got paid staff doing your website they should be looking at search engine optimisation to get you a lot of clicks so your pages come top on google searches, or you can pay to come top as well........
im beginning to think we need to be campaigning for AFME to take down their booklet on Pacing it wasnt written by people with ME it was CFS clinic staff - might as well be an NHS document - it is from 5 years ago so is well out of date anyway. I have a particular axe to grind as Ive mentioned elsewhere that I was influenced by AFME booklets including this one to get back to work after only a few weeks off and to try to keep working, gradually increasing activity when in reality I should probably have taken a year off work to give myself the best chance of getting back to work.
yes if you look at their website they have a post every week - fundraiser of the week!!!!
large donner
Guest
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!!!!
To be frank I cant believe anyone believed that what they were doing here was engaging.
I told you so!!!!
LightHurtsME
Senior Member (Voting Rights)
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.
Alvin
Senior Member (Voting Rights)
I also mentioned the issues but many argued with me that i was the closed minded one...
I'm sure acknowledgement is forthcoming
Sly Saint
Senior Member (Voting Rights)
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?
blimey that is slow moving - give em another 7 years they might have got round to it
just actually read the web content I agree with @Trish Harumph!!
considering how long it has taken to get this done since we highlighted a few months ago that they didnt cover the potential harms of GET in particular, and considering they have paid staff to do this stuff who presumably have been recruited for their communications skills this is a poor job at a rework of the content. Basically they have just bodged in the extra information about concerns right at the end of the piece. You actually have to read the whole thing to get the message. The concerns about harm should be important enough to be mentioned at the start given they are consistently raised by people with ME and it has come out in their own surveys. It is basic for web content design, established by eye tracking studies, that people read in an F shaped pattern where they read the first paragraph and then literally skim the rest. I would bet that of people reading this page the vast majority will not even reach the bottom. AFME are still letting down vulnerable people especially those newly diagnosed by relegating this information to the lower reaches.
And I havent even mentioned the wording......
considering how long it has taken to get this done since we highlighted a few months ago that they didnt cover the potential harms of GET in particular, and considering they have paid staff to do this stuff who presumably have been recruited for their communications skills this is a poor job at a rework of the content. Basically they have just bodged in the extra information about concerns right at the end of the piece. You actually have to read the whole thing to get the message. The concerns about harm should be important enough to be mentioned at the start given they are consistently raised by people with ME and it has come out in their own surveys. It is basic for web content design, established by eye tracking studies, that people read in an F shaped pattern where they read the first paragraph and then literally skim the rest. I would bet that of people reading this page the vast majority will not even reach the bottom. AFME are still letting down vulnerable people especially those newly diagnosed by relegating this information to the lower reaches.
And I havent even mentioned the wording......
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Skycloud
Senior Member (Voting Rights)
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.
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.
Jonathan Edwards
Senior Member (Voting Rights)
Allele
Senior Member (Voting Rights)
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.
oldtimer
Senior Member (Voting Rights)
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!
Esther12
Senior Member (Voting Rights)
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)!