If ever been seen by UK 'CFS/ME' clin... - Myalgic Encephalo...

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If ever been seen by UK 'CFS/ME' clinics what was your experience? Tick any that apply. (Will be more polls on this subject in future too!)

Starbys profile imageStarbys80 Voters

Please select all that apply:

15 Replies
Ian123 profile image
Ian123

Only enough funding for ruling out other conditions then go away and live with it with a letter for GP where medications were suggested.

MKMale profile image
MKMale

I was lucky to attend both a chronic pain management and a chronic fatigue management course, as well as separate CBT, all helped a little with pacing myself and 'managing' my illness. Every little helps ...

slowmotion profile image
slowmotion

I had four years of pestering my gp until I finally saw a specialist.

JayTon profile image
JayTon

I asked my GP last week if I could see somebody for my CFS and she said there was no such person!

Chiefette profile image
Chiefette in reply to JayTon

There is in Leeds West Yorkshire

Hi I live in Nottingham and have been to sessions at the local hospital to help me copy better with my CFS. My doctor had to refer me. I would think that there are places near to where you live. I hope this helps x

One CFCs/me nurse in the whole of my county ... Oh wait ... He's the only one trained nurse in the whole of Scotland!! v. Busy... Waited a year for appt.. Very knowledgable and helpful guy who is battling to get through his workload.

ukmsmi4 profile image
ukmsmi4

My GP is very understanding and supportive but it seems what is available to her is very limited. In fact I can't criticise any of the people I have had to deal with (I think the NHS staff are brilliant) just the lack of assistance they have been in a position to offer.

Did have a referral to a specialist clinic but the nearest one was 40 miles away so I only managed to make the journey once. You don't see a doctor/consultant there only an occupational therapist for one hour. He was very pleasant and understanding, confirmed the diagnosis as a clear cut, classic case of CFS/ME. Then he briefly discussed pacing, the importance of sleep etc. But because of the distance I couldn't make any more visits so I had around 8 phone call sessions with him which basically amounted to moral support and a few suggestions of coping techniques. That was my total contact with the clinic. Welcome for what it was but no real effective help.

In the four years since diagnosis the only other thing I have managed to get is a place on a CBT course specifically for CFS/ME sufferers starting this September. Never been referred to hospital or any other specialist or consultant for anything directly related to the condition because as far as I have been made aware there IS nothing else on offer in this area (Gloucestershire). I'd love to be referred for GET but not aware of it's availability in this area.

I was fortunate enough to stay at the M.E. Centre in Romford for three weeks many years ago. It was helpful with learning to manage the illness. Test were also completed on the six staying on the ward, e.g. MRI scans, nerve conduction, bloods etc.

I have also had regular one to one support from an OT attached to a local M.E./C.F.S. clinic (no longer exists) which included assessment for aids in the home, help with managing the illness, grading activities, relaxation. This prroved invaluable.

I have also regularly seen an excellent clinical psychologist with a particular interest in M.E. He offered support with mental health, CBT, help with accepting and living with M.E. Reinforcing and reinforcing the message accept, adjust, live.

I have not been able to work for 20 years but have now reached a point where I can manage my M.E. I still need a good day and a half sleep each week on top of my night sleep but I am able to enjoy the quietside of life.

GillD38 profile image
GillD38

Good poll. I felt that the Occupational Therapist who saw me at Derby (who normally dealt with people living with other chronic conditions and diseases, like cancer, stroke etc) focused on helping me to understand patterns of M.E and to cope with my symptoms. I couldn't help feeling like I was being judged somehow. The whole 'psychological cause ' aspect hasn't left the zeitgeist of those in the NHS treating the condition.Even if that was the case, why should psychological conditions and diseases be any less important so far as treatment goes? Even I am hesitant about calling M.E. a disease, and I should not be, as it is a disease. One might learn to live with it; that does not mean one is content with that. Mindfulness has helped me and no doubt others. But that does not mean that we should give up on the search for a physical cause and a cure.

Chiefette profile image
Chiefette in reply to GillD38

I call it a long term condition

I waited 6years for a renowned London clinic who asked me to sign a form to say that I could run down flights of stairs in a fire/emergency, as it was upstairs(I also have Fibromyalgia /CFS) , so I never attended!

I heard from other attendees that they took all of their painkillers away on admission and wouldn't let them have anything, saying it was psychological! So quite glad I didn't go.

PagingDrbumbrain profile image
PagingDrbumbrain

I'm attending cfs clinic and the girl seeing me seems like she doesn't know enough to be talking about it. She is repeating the same old sleep better and ill see you next time. She just repeats everything I've had before from my pain clinic. Also I had to rearrange 2 appointments and I got a letter telling me off and having a go because I'm ill some days and can't manage in..!???.

I've lost hope ,no one listens to a word I say.

Mary76mary76 profile image
Mary76mary76

Torbay offered me a place on a me/cfs CBT 6 morning sessions , well spaced out, with 10 other ME sufferers. I found meeting other long term sufferers with the same condition so very supportive, and their experience of ME/CFS along side the occupational therapists full acceptance of our health issues was truly amazing. Never before in my 30 years of ME/CFS have I spoken freely and felt no judgement about my condition and the lifestyle ME brings. I felt a huge burden had been lifted off my shoulders.

The CBT element of the sessions, felt like a good starting point for the sessions and indeed a gateway to alternative ways of looking at the world, for me meant stepping back further from the world on my terms and trying to stop apologising for my limited energy and slow mind. I feel more hopeful for my young daughter who also has ME/CFS.

Merkat90 profile image
Merkat90

They made out was a mental illness and told me rest daily as if wasnt allready .told me exercise whichade me very more unwell to this day . Thanks sedgfeild me clinc...