ME/CFS support

[Realityofinvisibility]

If you have this did you recover or manage symptoms? I’m desperately looking for advice as I’ve been unable to do anything for just over 4 years now.

I had loads of tests and things initially and once I had a ME/CFS diagnosis I was discharged and there’s been no further help and nothing is improving at all?

Any advice welcome because I just don’t know what to do

ME Association have a very good website with lots of factsheets to download for free.

A couple of good books are: Fighting Fatigue by Sue Pemberton and Catherine Berry and Classic Pacing for a Better Life with ME by Ingeborg Midselm Dahl.

You can also get a useful free pdf Post-exertional Malaise Avoidance Toolkit from the Open Medicine Foundation (just google it).

Basically you need to learn to pace and manage your energy. Never go beyond your limits. It's very restricting and not easy but it does help you improve. It takes time though.

I’m just getting frustrated as my limits are still so little and I can’t get anything done. I will take a look at what you’ve recommended . I know I had so many bloods done and my gp kept saying it was maybe a gynae or hormone issues so I’ve had lots of scans too but I’m wondering if I need some other kind of test as it’s not getting better. It started after appendicitis I was fine before then was extremely ill as it was misdiagnosed as mesenteric Adenitis and I got a very severe infection and needed 2 surgeries and a long stay in hospital. I’ve just never fully recovered and I feel that was the trigger but the gp says it wouldn’t be.

Both ME Association and Action for ME may be able to supply contact details for private ME specialists or at least interested generalists you could consult, but they won't be cheap! They will be able to tell you about any local NHS clinics too.