Discussion in 'Action Alerts and Advocacy' started by AndyPR, Apr 24, 2017.
It's a bit of a pity it diddn't include 'or has GET actually helped you, and how'.
22nd April 2017 by StopMAGENTAteam
Why would an advocacy group want to feature misdiagnosed patients?!
If a person can sustain and then build up exercise without relapsing, they clearly don't have ME, but another diagnosis such as deconditioning, over training/burn out, TATT or depression.
I would agree that GET may help patients with Chronic Fatigue F48.0, but on the UK NHS this is not 'CFS/ME'.
Unlike American Fukuda CFS, British CFS/ME requires PEM present.
Post Exertional Malaise won't get better, by engaging with GET in the same way slowly drinking Coca Cola gradually does not reverse the effects of Diabetes by a diabetic sugars gradually 'getting used' to liquid sugar, unless they're misdiagnosed.
Including the misdiagnosed who respond favorably to GET would only increase further denigration of the patients with both Organic CFS & ME, both who get worse with GET.
@Jenny TipsforME - just tagging you in this for info.
@RogerBlack positive stories are few and far between anyway, but we are clearly representing the voices of those who have either been harmed, or had no benefit. This is an advocacy campaign rather than a research project. If a prescription drug benefited 5% but 51% got worse and the rest were the same, an advocacy campaign wouldn't be putting out lots of stories from the 5%, it is the 51% who are of interest.
The idea is that these posts tie in with the Millions Missing theme. Some people are unfortunately missing more of normal life unnecessarily after they have been given bad advice to do graded exercise therapy. It is important that these patient experiences are listened to, especially as the clinical guidelines are up for review this year.
I do not disagree that exercise in the case of CFS/ME is generally unhelpful.
Improvements could however be interesting to find out, both in that it weakens the argument 'x people said it made them worse, but you only asked if it made them worse', and from the perspective of working out the patient cohorts properly. Were the people that it improved (presumably who were counted as improvers) actually improved in a meaningful sense a year out, or did they have 'chronic fatigue' not CFS in the first place.
@RogerBlack that is a research project. It would be worthwhile, but beyond the scope and with a different objective from what we're doing. You would need to put effort into getting a representative sample, case definitions and all that type of thing.
We are simply giving a platform for patients to voice their experience, which is largely negative. In 2007 it was felt that patient voice was ignored in drawing up the NICE guidelines and a decade of bad advice followed. Some people have paid heavily for this, and that is what we're highlighting in the hope that we might get listened to this time.
We are trying to include stories from slightly different angles, so they won't all be variations on "I was quite ill, I did what they said and now I can't get out of bed". This is more for interest and to show the range of impact eg the international impact, people doing it with a specialist but also people taking it on as something safe to do on their own. What happens if you try to refuse GET?
I note that 'what happens if you try to refuse GET' is one of the main reasons I'm now largely disconnected from the health service.
I could do with proper treatment for asthma, dental, migraine, weight, for a start.
The risks to me from this pushing of GET/CBT as a treatment are several-fold.
Being re-diagnosed with 'pervasive refusal syndrome' or something, because I can't get out of the house reliably, or attend things, or refuse to do things that are likely to harm my health.
This rediagnosis causing me to be required to spend 35 hours a week seeking work, and to take pretty much any work. (refusing to do this would result in no income, and likely me ending it all if I can't promptly get the decision overturned). (I'm struggling with 0.35 hours of 'work' a week).
The rediagnosis meaning that any treatment for CFS that does become available may be hard or impossible to access - as I've not got CFS.
The effort of trying to comply with CBT or GET causing a crash.
@RogerBlack yes I worry about this too and MUS, but I haven't gone completely off grid in terms of medical care. I'm currently seeing a neurologist which is definitely a risk for this type of thing.
Things like dental treatment you should be able to get without any mention of GET?
First post http://www.stopget.org/2017/05/missing-more-graded-exercise-therapy-ruined-me/
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