chronic fatigue syndrome M.E.

Hii would like to hear back from anyone who has cfs M. E. Long term. Does anyone have enough support do they go to a specialist for M.E. i have been to one at my nhs hospital. It lasted about a year. It was then stopped. As they decided they gave me the rehabilitation support a plan to follow and that was as much as they can do now. Do others find support for evidence letters from other resources. Can i ask them to re see me. They said they wouldnt just for benefit evidence. Can anyone help. I have the support from my G.P. a letter saying nothings changed. Butim not think thats enough as i need a functional detailed day today letter also. G.p. cant supply. Be grateful to hear peoples outcome of similar situation. As i got my assessment coming up . has anyone gone to a private specialist to obtain this. As i got it long term. It cant be expected to suddenly go away as tbis condition never does. Cfs M.E it fluctuates but in mycase has not got better like hear the forums public answer thanks nicky.

I don't have specialist report for ME either but I sent a flare up plan from my occupational therapist showing all my aids and pacing strategies which include things like having to go back to bed, noise cancelling headphones etc plus a SocialServices adaptations report and where possible related all my aids and adaptations (grab rails, half steps, leva taps etc) to both my symptoms and the activities on the PIP and ESA forms. Also a statement from my son who knows best how my illness affects me daily and stating my functional limitations again related to activities on PIP and ESA forms. Also a diary of symptoms, pain, fatigue etc based on how they affect your ability to do PIP activities and distances you can walk/mobilise can be helpful. Hope some of this helps.

Hi Nicola.
You can submit, as evidence, letters from a whole range of people; family, friends, anyone you've seen about your health: an HCP, social care worker, anyone at all. It all goes towards painting a picture of what your abilities are. You can also submit previous supporting letters you've received if your health picture remains unchanged.
Try to do a daily dairy.

What assessment are you having? Pip?

Don't put pressure on yourself to obtain a letter from a specialist. There are very few specialists in this area. if you are able to see one, great, but many people with this illness do not have specialist support. Depends where you live.
"Tranquility" gives good advice.

I agree with Buddha*3 about getting letters from just about everybody! I have just had a tribunal for PIP and I have ME. I used letters for my first application years ago, and didn't see much merit in just repeating the same old again but the disability adviser on the panel had still taken the trouble to read these old letters, copies of which were sent as a bundle to the panel by the DWP, and she asked me in detail about what my Sister had said about not being able to socialise. My point is that they do indeed seem to put credence to these seemingly lightweight reports so yeah, go for it. Use friends, family, cleaners, helpers, the gardener. Anyone who can see how you are. Good luck.