Countrygirl
Senior Member
- Messages
- 5,475
- Location
- UK
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.
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
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?
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).
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.It is called reactive cbt when used for ME, see Malcolm Hooper's letter.
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.
much easier said than donethe challenge is educating them about the health politics of ME
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.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
I thought it was directive CBT (as opposed to supportive)?It is called reactive cbt when used for ME
I thought it was directive CBT (as opposed to supportive)?
What is the difference between Directive and Non-Directive Therapy?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.