CFS/ME Self-Management Seminar
Posted , 8 users are following.
Hiya
Im not on here very often so apologies if this has already been done to death!!
I was just wondering if anyone has been to one of these before?
Mine is NHS, I dont know if that makes any difference but it's probably not going to be schmoozy and Americanised or Evangelical. I was googling the other day when i found a charity that had Prayer listed in it's recommended treatments, it was a couple pages later trhat i noticed it was a Christian charity. Nothing wrong with it but i prefer my stuff to be a bit more pro-active!
1 like, 21 replies
sunshinemb Qwase
Posted
The CFS Self Management Seminar may be a shorter version of the 8week ME/CFS that involves CBT.
Now I hope I don't offend anyone with the following tale of my experience?!
The daftest thing was that the sessions were held in the early mornings???!!
We all sat on stand chairs around a large table...I asked where are the beds?!!!, cos I don't know how anyone with this condition can sit up for 2 hours straight, take in loads of verbal and written information about how to manage the condition in the session then leave without feeling really unwell..!!
We all used the table to lay our heads on!! Nobody completed the 8weeks course!!
At the very best managed 3or4 sessions! I could not remember a thing the woman said...as I fell asleep with head on table... not through boredom, but sheer exhaustion at the effort that it had taken to get there!!
And sitting in a room full of people with ME/CFS, well we all came to the same conclusion..."we should have stayed in bed"!!! We did give the poor facilitator a hard time though,...well we didn't get out much!!
Unfortunately I do have a severe condition and started with it in my mid 40's so I was fortunate that my kids were adults by then and I just had to look after myself!
I had to laugh at your comment about the seminar being "americanised"...as I thought about how they may have taken the chairs away by now and make people "stand" for the sessions!!!!...as I remember in my job before I was forced to stop work, that one of the bosses introduced these stand up meetings after visiting our American partner company!!!
Good Luck though with the seminar!!
jackie00198 sunshinemb
Posted
Well, I think you've picked a good handle, because you seem to have maintained your good humor, even with this awful illness. I was very interested to read about your experience. I assume these seminars are free under the NHS? Which is pretty amazing from where I sit (or lay), across the pond. Here is the U.S., of course, we have no national healthcare, so I think help is that much harder for us to come by. I had to laugh at your description of the seminar, though I'm sure you weren't laughing at the time. I often wonder how CFS support groups can even function. I could never sit up long enough to attend one of these. OK, now regarding those stand up meetings by your former American partner company...that's pretty far out. I'd call it cruel and unusual punishment. I'm retired now, but worked for about 50 years in the U.S. In all that time, I never heard of, or experienced, stand up meetings. I'd never even heard the term before reading your post. Our typical meetings have bagels, cream cheese, donuts...and chairs!
sunshinemb jackie00198
Posted
Thank you so much for replying to my post! I am glad that it made you laugh!
The boss was a bit of a twit to be nice!!...so none of us believed him and he never brought cake..!!
When I first attended the M.E. clinic in early 2006(referred by GP), I was told that I was far too ill to attend and told to go home and do nothing but rest!
It took me 3 more years to get to the point where I could attend and even then the after effects were horrendous and I was so ill just from trying to attend the sessions!!
The seminars are free as it is funded by the NHS and based on CBT and relaxation techniques. In my opinion they are more suited to people who have mild symptoms with some chance of recovery if they get a diagnosis early on.
For me, having severe symptoms and being misdiagnosed for 4years, I managed 3 sessions over 2months and suffered a major relapse(one of many over the years) because I was adamant that if this condition had any psychiatric basis I was going to cure myself one way or the other!
This is the only treatment that I am aware of in the UK that is available on the NHS.
I had the mitochondrial function test and the results were very poor, but she has been amazing, completely empathic, sympathetic and extremely supportive! It is private treatment so it does cost money!
I know she treats patients from all over the world!
Oh and I just wanted to say that the USA is one of my favourite places and I have had some wonderful times when my sister and family lived in North Carolina!
Have a good day Jackie and hope you are feeling better today?
jackie00198 sunshinemb
Posted
I got a diagnosis about 4 months after onset of CFS/ME. One would think that, armed with that early diagnosis, I would have found a way to get better. But, nooooo. I tried so many things, including CBT for years, supplements, B12 shots, detox and rotation diet, oxygen inhalation, on and on. I even saw a foremost CFS specialist in Asheville, North Carolina. All to no avail. So here I sit, still having problems with sleep (in addition to all the other stuff), posting this at 2 am. I'm sure my mitochondrial function is down the tubes. Sometimes, I feel like I've failed myself in some way. Like, surely I could have done something early on to prevent this illness from taking hold. If only I hadn't pushed myself so hard--that's the biggest one. I was like a crazy person, going from nutritionist to doctor to doctor. Also, trying to walk my way out of the illness (by gradually taking longer and longer walks). I had the early diagnosis, a lot of knowledge about CFS/ME, and good doctors, and still couldn't climb my way out. That's why I warn, in many of my posts, not to push it. I've seen firsthand how that can backfire. Oh, well. I'm sure things will look better in the light of day.