#MEAction petition: Stop GET trials, stop MAGENTA ("PACE for children") ***UK deadline 12th March***

[Countrygirl]

I think the problem here is that we don't have that many politically-literate ME patients who are knowledgeable about the problems of PACE and MAGENTA.

 

[Jan]

I'm quite surprised it didn't get more support from the US, #MEAction have been sharing it.

 

[Jan]

I don't think either of the two major UK charities have posted it though.

 

[daisybell]

I was just looking at the participant information forms for MAGENTA and am disturbed although not surprised by the complete lack of acknowledgement that exercise might be harmful.....
Given the fact that harms have been so poorly measured, how can it be ethical?
Nothing should be surprising anymore given the history of their research, but still....

 

[AndyPR]

Visit http://www.stopget.org/ for the background detail or use the links below to go straight to the petitions.

UK, now at 3,340. 10,000 needed for response from Parliament.
UK citizens, please also sign the global one below.
https://petition.parliament.uk/petitions/166601

Global, now at 3,979.
https://my.meaction.net/petitions/stop-graded-exercise-therapy-trials-for-me-cfs

Sign now to stop trials using GET on ME sufferers (especially on children i.e. MAGENTA)

 

[slysaint]

Question; noticed they were very careful to keep GET out of the FITNET media coverage.........but doesn't FITNET also incorporate GET (possibly by a different definition)? If so can the petition title be altered, to include FITNET or something?

 

[JoanDublin]

Question; noticed they were very careful to keep GET out of the FITNET media coverage.........but doesn't FITNET also incorporate GET (possibly by a different definition)? If so can the petition title be altered, to include FITNET or something?

Spot on @slysaint This from the FITNET paper

"Addressing physical activity patterns is important in CBT for adolescent CFS. The CBT modules are adapted for two levels of physical activity: relative active and passive, based on the existing protocols[3, 16, 17]. An actometer, a motion sensing device that can quantify physical activity, will be used to assess the activity pattern [27, 32]. Adolescents with a relatively high physical activity pattern alternate between periods of activity and periods of rest[16]. For these patients the therapy focuses on learning to recognise and accept their current state of fatigue and impairment. Then they learn to distribute their activities more evenly. After this, the patient will start to build up activity levels. In contrast, patients with a low physical activity pattern spend most time lying down and go out infrequently. Most do not attend school at all. For them, the treatment program starts with a systematic build up of activity as soon as possible, while addressing and challenging their beliefs that activity would aggravate symptoms."

http://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-11-23

 

[AndyPR]

Visit http://www.stopget.org/ for the background detail or use the links below to go straight to the petitions.

UK, now at 3,419. 10,000 needed for response from Parliament.
UK citizens, please also sign the global one below.
https://petition.parliament.uk/petitions/166601

Global, now at 4,117.
https://my.meaction.net/petitions/stop-graded-exercise-therapy-trials-for-me-cfs

Sign now to stop trials using GET on ME sufferers (especially on children i.e. MAGENTA)

 

[Jenny TipsforME]

I'm just organising the case studies to start writing articles which will hopefully reach further than the ME bubble.

Given the events of this week, it would also be handy to have short case studies/quotes about CBT. The focus will still be stopGET but we'll look out for opportunities to also mention problems with CBT.

Do you have a CBT and/or GET story to tell? I'd be particularly interested in specific content eg what you were asked to do. CBT seems to be different for ME so we want to convey that effectively. People reading may have successfully received CBT for something like anxiety and wonder why we are objecting.

Add your story here or email GETpetition@gmail.com

please be clear about what name you'd like used (pick your pseudonym or state clearly that we should use your real name).

 

[Jan]

It is called reactive cbt when used for ME, see Malcolm Hooper's letter.

 

[Jenny TipsforME]

It is called reactive cbt when used for ME, see Malcolm Hooper's letter.

Yes thank you, couldn't think of the word! There is an appropriate place for some CBT in chronic illness, in terms of coping with being ill, but the reactive CBT for pwme has different content from normal which undermines the validity of the illness/disability.

 

[Jan]

I totally agree, I thought that counselling etc was a good thing prior to this lot's involvemnt. I imagine it's really helpful, if it's used properly, to cope with the grief of losing everything in your life when a chronic illness hits you and also to help you try to rebuild something from what's left, and to help you find the strength to keep going. This is what decent psychs should be doing, not hijacking an illness and trying to brainwash it's victims.

 

[Jenny TipsforME]

I think the problem here is that we don't have that many politically-literate ME patients who are knowledgeable about the problems of PACE and MAGENTA.

I think there is a problem: we are ill!

There are definitely plenty of pwme who are very knowledgeable about the problems of PACE and MAGENTA.

Out of the 17-20 million pwme there must also be plenty of politically savvy people but finding people who have the capacity to consistently support campaigns like stopGET is difficult.

If you are reading this and have professional (or voluntary) experience of politics/PR/advertising/running charity sector campaigns please get in touch! It would also be very helpful to have input from people who have written articles for large blogs or papers. You can get involved as a one off, or just offer advice, or do something every week.

If you know someone else who has relevant experience, please let them know about this.

We could do with some well ally volunteers, then the challenge is educating them about the health politics of ME, but I think we can do this.

 

[slysaint]

the challenge is educating them about the health politics of ME

much easier said than done

 

[AndyPR]

Visit http://www.stopget.org/ for the background detail or use the links below to go straight to the petitions.

UK, now at 3,427. 10,000 needed for response from Parliament.
UK citizens, please also sign the global one below.
https://petition.parliament.uk/petitions/166601

Global, now at 4,122.
https://my.meaction.net/petitions/stop-graded-exercise-therapy-trials-for-me-cfs

Sign now to stop trials using GET on ME sufferers (especially on children i.e. MAGENTA)

 

[Jenny TipsforME]

I thought that counselling etc was a good thing prior to this lot's involvemnt. I imagine it's really helpful, if it's used properly, to cope with the grief of losing everything in your life when a chronic illness hits you

This is a bit off topic of the thread, but in 2001 I had counselling through a ME charity which no longer exists. It was helpful in the way you describe: processing loss and other people's prejudice. The other side is that it uses a lot of emotional energy and was physically draining to get there. This type of support over skype could be helpful for lots of people.

It is still possible to access this style of counselling: you need to find an accredited counsellor/psychologist who specialises in supporting people with chronic illness.

The BioPsychoSocial School of ME nonsense is not representative of the psychology profession in general.

 

[slysaint]

It is called reactive cbt when used for ME

I thought it was directive CBT (as opposed to supportive)?

 

[AndyPR]

Nope reactive, that's why the BPS crowd have to apply it, in the wrong hands it could easily explode.

 

[Jenny TipsforME]

I thought it was directive CBT (as opposed to supportive)?

Directive is definitely a term I've seen used and makes more sense. It is directive because it is changing how you think in a clear direction/agenda. Whereas supportive is supporting you to cope better with your circumstance which is living with chronic illness.

Just done a quick google: "reactive CBT" doesn't exist (although this means Google missed our discussion )
"Directive CBT" vs "Supportive CBT" seems to exist only in relation to ME, and is mentioned a few times eg Professor Hooper. I think usually all CBT is considered somewhat directive, so I'm not too sure how well this would be understood outside of the ME debate.

 

[slysaint]

Directive is definitely a term I've seen used and makes more sense. It is directive because it is changing how you think in a clear direction/agenda. Whereas supportive is supporting you to cope better with your circumstance which is living with chronic illness.

Just done a quick google: "reactive CBT" doesn't exist (although this means Google missed our discussion )
"Directive CBT" vs "Supportive CBT" seems to exist only in relation to ME, and is mentioned a few times eg Professor Hooper. I think usually all CBT is considered somewhat directive, so I'm not too sure how well this would be understood outside of the ME debate.

What is the difference between Directive and Non-Directive Therapy?
1 Answer
Written 8 Oct 2015The difference is who takes the lead in therapy (setting the agenda, introducing content for discussion, etc.).

Therapists are being directive when they take the lead and provide information, offer to teach specific skills, assign tasks within or outside of session, etc. Therapists are being non-directive when they allow the clients to take more of the lead -- so the session focuses more on helping the clients explore their concerns and reach resolution by talking through / processing them, not by therapists giving active advice and direction."

It would appear we are not the only ones:
http://www.nationalelfservice.net/p...ession-according-to-a-reanalysis-of-rct-data/
"
Conclusions
The authors recommend that:

National clinical guidelines take our findings into consideration in recommending effective alternatives to CBT.
"