AIBU to ask for your help as there is now only 24 hours to save people with ME/CFS from serious harm

[peukpokicuzo]

Graded Exercise Therapy does seious harm.

What it is is an unproven but cheap to implement idea to treat people with ME/CFS.

People who have been subjected to trials have had their condition seriously worsened, often for years, often without having been given the opportunity to give to deny informed consent.

For reasons of fashion, and the personal bugbears of the researchers concerned, this harm is being ignored.

Please read up on the experiences of people who have been subjected to this so-called therapy at www.stopGET.org

Please sign the petition here petition.parliament.uk/petitions/166601 - this is urgent - the petition is only live to gather more signatures for the next 24 hours from now

Please bump this thread to keep it in the top Active threads just got the next 24 hours to get the petition signatures needed to get the government to take notice.

It has already been said by others but a petition is not the best way for participants who feel they have been misled by researcher to get this addressed/investigated.

I agree though that it would interesting to know what diagnostic criteria researchers used for cfs and me. Whilst eds has overlap symptoms (dd spent years having to go to bed the moment she got home from school, getting up only to eat and use the bathroom), some such as dislocations (subluxation and full) and arthritic changes to still growing bones during early teens are hard to mix up.

Research is needed on diagnosis rather than symptom treating which GET seems to be doing. Ime symptom treating is a good thing where no harm is inferred, such as mindfulness, amitriptline for better pain and sleep management. These types of treatment don't mask symptoms but enable sufferers to have a better quality of life.

I have severe ME/CFS, Fibromyalgia and now Osteoarthritis & Hypermobility Syndrome. And even before my Arthritis developed if I did exercise it knocked me off my feet. However if I laid down 24/7 I was ten times worse.
I have had this condition for over 20 years and Graded Exercise is something I have been doing my own version of ever since. And I have managed without serious harm??

Wow user that is scary that something like pernicious anaemia was not checked before the stage you reached. Blood testing for anaemias, thyroid, diabetes are pretty much first line investigations when we are presented with patients who are experiencing exhaustion, muscle fatigue etc.

Are you well now?

Pausingflatly What a load of rubbish!

ME/CFS & Fibromyalgia was PROVEN as a neurological condition in 2013.

Get your facts right

I have had graded exercise therapy and it works to help stave off a slump/flare up so for me yabu and I won't be signing

GET was becoming a new "thing" when I fell ill and I thank God it wasn't available for me then. Because I was desperate to get well, there is the risk I might have pushed for it had it been an option. I am so glad I didn't. Thanks for sharing OP, have shared this on FB.

NotaSnowflake I am glad you did have a positive reaction tyo GET. I admit I hadn;t heard of or known anyone who had, so possibly my opinion is a bit ignorance based. I did know a fellow sufferer at college and she would allow herself a bit of daily exercise each day to keep her on an even keel. Sometimes I could manage a bit of activity, at other times not although for me it amy have been a lack of motivation issue as well making me give in more easily to my symptoms. I think different things work for different people. I think my concern is that it is pushed as the only treatment available these days along with CBT.

This is why research is needed on programmes like GET. 20+ years ago I had viral meningitis and for years afterwards I had what I understand would be considered to be cfs. My GP used to say to me that if he believed in it he would say I had what he referred to as yuppie flu. There was nothing to be done for me, I learnt not to mention the chronic fatigued I was experiencing on the many trips to GP for tonsil, ear and chest infections I experienced. GP was more than happy to dish out abx month after month but wouldn't entertain there was anything more serious going on. During the worst periods I could not even tie my own shoe laces, as bending over caused me to black out.

I don't thin we can dismiss programmes like get without further research. Unfortunately it is unlikely that there is a magic pill cure in the pipe line for conditions like this and that means symptom management is essential for sufferers.

It's just I don't think the psychosocial effect is happening on the patient's side of the desk...

I love this, I want it on a t shirt.

The research has been so dodgy on this over the years, in particular not the criteria for including participants being very woolly and pulling in pretty much anyone with any sort of reported fatigue, so only SOME participants had actual CFS/ME while others had all sorts of different issues including possible depression. Pacing (which includes physical activity and exercise) has been consistently reported by patients as being far better than GET while many people with actual, genuine CFS/ME have been encouraged to increase what they do, been pushed past their body's ability to recover and been made worse.

I have EDS with POTS/Dysautonomia and could easily have been stuffed in this group. One consultant insisted on shoving 'CSF' on my notes which basically means 'these symptoms with no other medically diagnosable cause', despite my having two separate, medically diagnosed and evidenced conditions with test results that can be reproduced any time, any place, by any doctor, BOTH of which cause fatigue.

in particular not the criteria for including participants being very woolly and pulling in pretty much anyone with any sort of reported fatigue, so only SOME participants had actual CFS/ME while others had all sorts of different issues including possible depression.

Oh this in spades!

It was another reason I wouldn't have volunteered for that big "M.E./C.F.S." trial, once I'd read the criteria.

In contrast, over the years I've volunteered for other medical trials for unrelated conditions (I like to contribute to science). I was turned down for one because, after two doctors had assessed me, they weren't absolutely certain I had the right condition. And they didn't want me polluting their data.

And yes, NotASnowflake, you've misread my post.

As currently used in the UK, a diagnosis of "M.E./C.F.S" is a dustbin filled with a multitude of different conditions. Many of the conditions binned will indeed have neurological impacts.

My own hunch is that the process we're seeing is that:

a) an initial syndrome was identified and described as "M.E.". (1950s, IIRC - sorry, I'm doing this off the top of my head)

b) the use of the diagnosis has expanded and the term expanded to "M.E./C.F.S", partly because it's a convenient place to dump frustrating, unidentified conditions, partly because of active and widely publicised empire-building by the Wessely school (Wessely himself has made no secret that he wants to sweep fibromyalgia, period pain and Gulf War Syndrome into the same bin, for example)

c) the individual conditions currently coming under the umbrella of an "M.E./C.F.S" diagnosis will increasingly be recognised and hived off - EDS is a good example.

d) the rump of people left under "M.E/C.F.S" will become smaller and smaller, until no one who met the original "M.E." criteria from the 1950s will be under it.

So I find it tricky when people talk about "M.E./C.F.S" as one thing, or as "it". The conditions to which "M.E./C.F.S." refer are plural, caused by different things, treated by different things. The only singular is the label.

This is really worrying as people claiming ESA/UC may be forced to participate in treatment or be sanctioned.

Bump

Again

Thank you MNHQ

A better way to put what I said is that there are also doubts over impartiality of some key UK research, which also affects the validity of the data.