Posted , 8 users are following.
Help I have been researching Post Viral Chronic Fatigue for the last 9 months and wondered if anyone had been to any clinics to help manage symtoms or been into any hospitals for help ?
0 likes, 9 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
GeorgiaS Jyst
Posted
After my diagnosis at an ME clinic occupational therapists came to my home because I was too ill to go there. I was taught pacing and some gentle yoga that I can do on my bed. The yoga's really helpful.
elaine62759 Jyst
Posted
phil50852 Jyst
Posted
I'm still waiting to attend one - saw consultant 3 weeks back and GP is still waiting for his letter telling them to send me to the nearest specialist centre. Once there I guess it will be the physio and perhaps CBT although I'm not sure I need the latter; I'm coping well with it on the whole.
Beverley_01 Jyst
Posted
Hi there,
Yes, I have been attending the cfs/me clinic in Leeds West Yorkshire. It's the nearest one to me but is miles away so many of my appointments have been over the phone. It has been useful in that it validates my experience of this awful condition and has helped me to think more about resting and pacing and what resting actually means. It's hard to really do'nothing' . I was given a sleep activity diary to keep and it pointed out to me how much I was actually doing (small things add up)
Are you being referred to a clinic?
Beverley
artistmike Jyst
Posted
Funnily enough I've found that the most benefit I have found from attending my ME clinic is that they have highlighted other problems that my doctor hadn't. Mainly I feel because my own doctor just puts everything down to the ME and then misses out other unrelated conditions.
I suspect that our ME clinic learns as much from the patients as vice versa but I'm glad for my twice yearly attendance. At least there I feel people understand and are sympathetic to the sufferers of this ghastly thing.
Beverley_01 artistmike
Posted
Hi artistmike,
Is your service in the Nhs? Just I'm due to be signed off from my clinic in two weeks due to it being time limited. Curious as to whether there is follow up provision.
Beverley
artistmike Beverley_01
Posted
Yes it's at my local hospital in Barnstaple, North Devon and treats all the ME/CFS patients that are referred there from the local area, which apparently is quite a few.
We also have MEND, our local ME association which meets occasionally but I tend not to go as they don't contribute much really, though as they are nearly all sufferers, they are all limited in what they can do....
Beverley_01 artistmike
Posted
Thanks for the reply, sounds like you have a good Nhs support system there although as you say over subscribed. Our service doesn't continue after the agreed amount of sessions although you can be re referred.
A friend and I were going to set up a group here. In a small village where they live there are approx 80 people with cfs/me the gp told them. Trouble is, as you put, when you have the condition, running a group isn't exactly the best as it's limited to what's achievable on the day. My aim s to get well enough to hold seminars on the condition.
sueliz57 Jyst
Posted
I attended once to see the consultant and was then offered one morning group session and didn't learn very much I didn't already know, I suppose it depends where you live
I have asked my Dr if she could refer me again but she told me they still offer the same provision and thinks it's more about them learning about the condition than in fact offering patients any treatment!