Officially been diagnosed

Posted , 6 users are following.

After 2 years of the many symptoms I've been experiencing, last week I got my official diagnosis! I have ME and in a way it's a relief but also I'm kinda like... what now? What happens next. The CFS clinic has given me a butt-tonne of leaflets to read (which, considering my terrible concentration levels, I find laughable) and they've also referred me to a sleep clinic to make sure it's double definitely 100% CFS. Anyone have anh experience of what happens next that they can share?

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6 Replies

  • Posted

    Well...maybe I'm beating a dead horse here, but NHS recommendations for ME/CFS are largely being debunked now. Specifically, their recommendations for graded exercise (GET) and cognitive behavioral therapy (CBT). The study that resulted in promoting GET and CBT is now being called junk science by many. So be very careful with any form of exercise, cutting way back if you experience greater fatigue or worsening symptoms. Get lots of rest and pace yourself. Don't go outside of your energy envelope, or you worsen your chances for recovery. De-stress in whatever way you can, eat healthfully (avoiding caffeine and sugar), and get a good night's sleep if you're able. 

    • Posted

      Yeah I've seen a lot about the PACE trial being debunked. I should probably look into modifying my diet a little and see if that helps at all (hopefully once I'm no longer at my current job I'll be able to use my energy to actually make nice food)

  • Posted

    I'm in England too and got my diagnosis last week. No CFS clinic here though, I was seen by a general rheumatologist. Waiting for the consultant's letter to arrive at my GP -  he was telling her about the specialist centre at Stoke Mandeville on the basis that I should be referred there next. My GP will probably need to apply for funding for that. Everything seems to takes ages...! The specialist centre is about 45 minutes drive from me, so that will be fun...assuming my wife will be working and can't take me.

    I'm trying body scan meditation (a counsellor appointed by my workplace sent me some youtube links) and various supplements. Also started acupuncture as some have said that's helped them. Felt nothing much after the first session (perhaps a bit more lucid for a short time) but more lucid after session 2 - so I'm going to keep that up for a while and see.

    I've been off work for nearly 3 months so am trying to demonstrate to work that I'm doing everything possible, and doing everything they suggest. So far they're being patient.

    • Posted

      Phil: Just wanted to mention there's an excellent meditation app available on the iphone. It's called "Insight Timer," and offers many guided meditations as well as a timer to use if you just want to meditate without these guided meditations. The app, if I'm remembering correctly, is either free or very inexpensive.

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