My Story - Get Well From ME (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome CFS)

This is my story. After 4 happy years at university, I came down with a severe virus that's a bit like glandular fever, called cytomegalo virus (CMV). I was extremely ill in bed for several weeks, with a huge range of symptoms. Despite trying to force myself back into work, I basically never recovered. There were other complications too, and I was eventually diagnosed with ME. I've spent most of my twenties virtually housebound. But thankfully in recent years I have been getting better. I am now working part time, mainly from home, and going out and doing more. I still haven't made a full recovery yet (if anyone else has any tips and ideas, please let me know!), but I hope to continue getting better!

ME (Myalgic Encephalomyelitis - sometimes still known as Chronic Fatigue Syndrome CFS) is a serious, long-term neurological illness that also affects the body's immune system, hormones, muscles and circulation. There is no cure for ME yet, or even a diagnostic test that doctors can use. Up to 250,000 people in the UK have ME, their lives are often affected drastically by this severely disabling illness - many are housebound or confined to bed.

See my other videos so far and subscribe to my channel http://www.youtube.com/getwellfromme . You can follow me at http://facebook.com/getwellfromme and http://twitter.com/getwellfromme

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[electricrailwaygod]

I looked CFS up on Wikipedia. Many of the symptoms explaied, I have indeed experienced myself. Though I am not necessarily ready to jump to the conclusion that I have ME/CSF. I have however been diagnosed with IBS-D. It is (fortunately) only a mild to sometimes moderate form, but only under severe stress (or under rare occasions of the heavy indulgence of alcohol have I wound up in some rather bizzare and embarrassing situations) would I considere such to cross the line as to be severe (?).

[GetWellFromME]

@electricrailwaygod Sorry to hear you haven't been well. The real hallmark symptom that would mean you had ME is if you get absolutely exhausted and feel sick and ill, out of all proportion to just doing a tiny bit of activity - and that it then takes you a long time to recover from that. People with ME almost always have very limited mental stamina ("brain fog"), and hypersensitivity, dysautonomia, immune symptoms, and more! Best to check with a *good* doctor.

[Carrigon]

Thanks for sharing your story. So much of it I've gone through. And that feeling of trying and trying to get well, and trying everything in the universe and still not being well. At least we know so much more now about this disease than ever before. Hopefully there will be real treatments for us.

[GetWellFromME]

@Carrigon Thank you. Yes I am sure the tide is turning, even if it's very very slowly - and that proper research will actually start again now (after a wasted 30 or so years), and understanding and hopefully even treatment will follow!!

[ceahorse56]

Thank you for sharing your story! I'm having a severe flare right now and your video's are a blessing to listen to. I'm not crazy I'm sick! Have to keep reminding myself since my doctor's don't believe me or care!

[GetWellFromME]

@ceahorse56 It's unbelievable and horrific that there are still doctors who don't care about people with ME, or don't think we're ill. But we care! :)

[KungZoo]

And to add, that I still cannot commute to work using public transport on a daily basis - far too draining. I can perhaps manage to travel out on public transport just once a month. So I always make it a policy to live within a 15-minute walk to my workplace. It makes a really big difference. (Most of my colleagues have a 1-hour commute each way every single day, but don't really think twice about it!)

[KungZoo]

Well done to your progress, Giles! The pattern and symptoms that you've had have all been identical to my case except for the headaches. I never get headaches. I also had coeliac disease discluded from blood tests, but I also got serious bloating from eating certain food products. I can also recommend hovenia dulcis as a liver detoxifier, and I would also urge you to look at okraw YouTube channel which will totally change your eating habits forever. Never give up!

[GetWellFromME]

@imawakebutsleeping ME, and all the things that get called "CFS" are very complex conditions, and I do believe the mind is very powerful and can play an important part for some people, but emotional therapies cannot claim to stop an infection, virus, retrovirus, or toxic load, from being present.

[jessical1969]

I meant gluten,,but said glucose.oops . I think avoiding processed foods ,and eating less carbs is helpful.