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StopGET: Missing More after GET?

People with ME know that graded exercise therapy is very unpopular amongst patients and most of us have us have heard horror stories. However, this isn’t what the general public expect when they hear about it. The name does not match our experience:

Graded sounds gentle

Exercise, that’s good for everyone, right?

Therapy has connotations of healing in a supportive environment

Personal stories can be a useful tool for making a heartfelt connection with the general public, especially for a topic like this which is counterintuitive.

For ME Awareness month (May) and Millions Missing we want to share your experiences of graded exercise therapy. We will post your story here and share in various places online.

If you or someone you know has a graded exercise therapy story to tell: Email GETpetition@gmail.com your story in a couple of paragraphs.
http://www.stopget.org/2017/04/missing-more-after-graded-exercise-therapy/
 

Dolphin

Senior Member
Messages
17,567
http://www.stopget.org/2017/04/missing-more-after-graded-exercise-therapy/

22nd April 2017 by StopMAGENTAteam

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People with ME know that graded exercise therapy is very unpopular amongst patients and most of us have us have heard horror stories. However, this isn’t what the general public expect when they hear about it. The name does not match our experience:

Graded sounds gentle

Exercise, that’s good for everyone, right?

Therapy has connotations of healing in a supportive environment

Personal stories can be a useful tool for making a heartfelt connection with the general public, especially for a topic like this which is counterintuitive.

For ME Awareness month (May) and Millions Missing we want to share your experiences of graded exercise therapy. We will post your story here and share in various places online.
If you or someone you know has a graded exercise therapy story to tell:
Email GETpetition@gmail.com your story in a couple of paragraphs.

Points to consider
If you’ve already written a suitable blog post about GET, the most energy efficient solution is to simply send us the link and we’ll repost it (perhaps you want to add a bio paragraph to promote your blog?).

If you are writing something new, these are some pointers:

Concrete examples of how your health and limitations changed are helpful (or perhaps there was no difference?).

How did you feel after GET?

Did it stop you doing certain activities?

How long did the impact last?

How did medical staff respond? Were you allowed to stop the treatment without consequences?

Imagining that the person reading knows nothing about ME could help you explain.

Do you have pictures you are comfortable sharing? Visible before and after GET changes would be particularly poignant.

Your story will be shared widely. Do you want to use a pseudonym or do you want to use your real name (plus contact details)? Please make this very clear.

Please also ask people you know who have a powerful story to contribute. We are particularly interested in hearing about children who have done graded exercise therapy.
A specific hashtag for this is #MissingMoreGET

So we can share on social media with various combos of #MissingMoreGET and #MillionsMissing #MEawarenesssmonth #stopGET #May12 etc

To get updates when Missing More posts are published, follow us on:

Twitter: @stopGETteam / @MEActNetUK

Facebook: www.facebook.com/stopGET or www.facebook.com/MEActNetUK
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
It's a bit of a pity it diddn't include 'or has GET actually helped you, and how'.

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

Senior Member
Messages
1,184
Location
Bristol
@AndyPR thanks
@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.
 

RogerBlack

Senior Member
Messages
902
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.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
@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?
 
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RogerBlack

Senior Member
Messages
902
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.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
@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?