NHS Chronic Fatigue and Pain Clinics

[Caroljm28]

For general information for all. Following my diagnosis in 2013 I attended a clinic run by the NHS in Aylesbury for CFS sufferers. There are many clinics run by the NHS around the country, my GP wasn't aware of them but we did some research and I was referred. The clinics offer 8-12 weeks management and information sessions. Please do ask your GP if you have one in your area.

[PaulaJE]

I had my 1st appointment with the CFS/ME clinic run by the NHS in Plymouth after being diagnosis in 2015. Like you I had to research as my doctor was not aware of this service. Once I found one in my area, my doctor then refer me. I did find it very useful and am looking forward to my 11 management and information sessions. Would seconded you about others asking their GP to refer them.

[myhealthneeds in reply to PaulaJE]

Hello. One of the difficulties is that these Clinics may not have a good understanding of ME as a physical and they may insist on calling it CFS. The guidelines they use are from NICE and are CBT and GRADED EXERCISE and the latter can be very dangerous if one has ME, not just CFS from some other cause. For example, my friend was put on an exercise bike to test her level level of ability and she did the best she could. She became worse and spent the next week in bed. She rang to delay the next appointment and was told the therapist asked WHY? When she told him what her reaction had been, he just said, Well I can't help you then. She then developed more and more symptoms and became worse instead of bett.er. People put their backs into these things to try to get well but when it's the wrong thing, it can be very serious.

Here in Cardiff there is a Pain Clinic that is willing to see people with ME/CFS and Fibro. They are good at looking at the person and assessing the pain and the condition but they can only really offer the usual things as they have no treatment for a physical condition. They can also refer the person to a Pain Hospital for 3 weeks inpatient in Brecon, but they also offer Graded Exercise and GBT. It is no good for people who cannot look after themselves, so that rules out people who are bed-bound or partially so. They have to apply for funding to go there and we have not had anyone go to spend the time there yet in order to assess what actually happens. But if they insist on the person doing exercise and 'working through the pain' and push the person to do more and more each day, then it could do more hard than good and the person could be permanently damaged. If the GBT therapist is working from the point of view that the condition is not physical but mental and is trying to removed the 'false idea of being ill' it will be of little use. For example, one doesn't treat Cancer by telling the person to take more exercise and to stop thinking that they are ill.

These Clinics can be ok for a diagnosis and for quoting that you attend it, from the point of view of claiming Benefits, as ESA and PIP want to know if one is attending a Clinic or seeing a Specialist. However they generally do not have a treatment apart from CBT and Graded Exercise.

All the very best.

[myhealthneeds in reply to myhealthneeds]

Also the ME TRUST is very good. Look them up on the internet. They have the Doctor and the Staff who used to be at the private hospital that treated ME called Burrswood. That is no longer a hospital that can treat people with severe ME.