Personal experiences of GET, CBT and specialist NHS clinics in the U.K.

[Rosa Amor]

I'm interested in people's personal experiences of CBT, GET and the NHS specialist ME/CFS clinics for a piece of creative writing I'm doing, inspired by the review of the NICE guidelines. All experiences shared will remain confidential as it's a fictional work of writing

 

[CreativeB]

Hi Rosa. Your project sounds very interesting.

I've a big gap between when I was first diagnosed with ME in about 1992 and now where I was possibly functioning normally, but latterly I think in denial. I never had CBT back in the 1990s but was encouraged to exercise.

Now, I'd place myself in the mild category, struggle to work full time. Through an occupational health referral, CBT was recommended but with a private counsellor, not through a clinic and I was banned by Occ Health from exercising .. was actually told to cut back on my activity.

I'm not sure if it helps, but I'm happy to discuss specifics more if you're interested

I have to say the fear of being referred to one of these clinics keeps me away from my gp and considering reducing my hours/going off sick

 

[Rosa Amor]

Hi Rosa. Your project sounds very interesting.

I've a big gap between when I was first diagnosed with ME in about 1992 and now where I was possibly functioning normally, but latterly I think in denial. I never had CBT back in the 1990s but was encouraged to exercise.

Now, I'd place myself in the mild category, struggle to work full time. Through an occupational health referral, CBT was recommended but with a private counsellor, not through a clinic and I was banned by Occ Health from exercising .. was actually told to cut back on my activity.

I'm not sure if it helps, but I'm happy to discuss specifics more if you're interested

I have to say the fear of being referred to one of these clinics keeps me away from my gp and considering reducing my hours/going off sick

Thanks for your reply @CreativeB. I was also encouraged to exercise back in 2000, when I was fist diagnosed. Let's just say I spent the next seven years in bed...

My health improved as a teenager to the moderate/mild scale. Unfortunately when I crashed at nineteen my parents pressed for a referral to our local specialist GP clinic. Previously our local specialist service had had a brilliant specialist consultant who supported my family enormously but he retired in 2007 (the year the NICE guidelines came out and has never been replaced. The specialist GP visited me at home and prescribed physio again! Has nothing changed in nearly twenty years???!!! I'd had my mitochondrial function tested by Dr Myhill by then (blood test) as well which showed my body produces approximately half as much as a healthy ones and I wasn't eating properly. I sometimes despair that we'll ever shift this stigma. It's already destroyed almost all of my life since I was eight.

Fortunately I was already seeing a private physio (for passive manipulation for my scoliosis but they didn't need to know that lol. They'd probably have considered it way too gentle.)

That's why I'm so keen to change the NICE guidelines. It's interesting that the fear of the specialist clinics actually makes you feel like reducing your working hours/going off sick @CreativeB . Wonder what NICE would make of that?

I'm also very interested in the experiences of patients who've actually attended these clinics and been forced into CBT/GET, not having the excuse I had that I was already receiving physio! I know people have suffered.

As they'll probably be receiving lots of complaints saying the basically the same things, my idea was to write a short series of sketches to explain how NICE guidelines are letting down both patients and health workers. I've always been fairly good at creating stories (if I do say so myself ). Though I'm beginning to realise it's going to be more work than I expected and might turn out too long for them to bother to read...

P. S thank you @Phoenix Rising Moderators for saving my draft for me x

 

[CreativeB]

Good luck Rosa