Don’t know a great deal about it. A mate suffers with it; sounds like she’s having a hard time at the minute; bit upsetting.

Any positive stories or treatments or anything anyone would like to share?

Thanks

Not a huge amount to say other than I know someone who had it as a kid (late teens), struggled to go to school or even get up off the sofa despite having been really active and sporty until then but gradually recovered and leads a normal life now including plenty of sport. The only possible hangover from it is still needing a lot of sleep though that’s hardly exclusive to ME sufferers.

No clear view on what lead to it improving other than time unfortunately.

This guy…

http://www.clivepowell-mtb.co.uk/allevents.php

…woke up one morning and couldn’t get out of bed. One the fittest men I ever met.

Took him 8 years to get his mojo back.

Had it really bad for a year or two combined with the inevitable (IMO) depression that goes along with it.

5 years on it still hasn’t completely gone away but it’s not too much of a problem most of the time as long as I’m careful not to overdo it.

http://singletrackworld.com/forum/topic/cfsme-exercise-advice-raising-a-few-hackles

yep, my better half has CFS and Fibromyalgia. Some days she struggles to get out of bed – today it was 3pm.

When she does get up she has all on to make some toast, and then sit down and thats her done for another hour.

If she gets up and feels ok, she sometimes does too much, and then ends up knackered for days.

Shes had it for a few years now, no sign of improvement

She seems to be worse during winter months.

Suffers from brain fog, forgetfulness, can struggle to put a sentence together.

She finds that acupuncture helps with her joint pain, but thats more the fibromyalgia side of things

Yes. I suffered for about 6yrs. During that time I was wholly unable to do any cycling, ended up doing reduced working hours and so on. Tried getting sorted via the good old NHS which involved cognitive behavioural therapies which are ultimately based around an assumption ‘it’s in the head’. However, it did bring to light some other medical issues like slightly underactive thyroid & low vit B12 levels… Tried homoeopathic treatments, tried “reverse therapy” (bollox) and what worked for me was Perrin Technique which is based around a failing lymphatic system. Work looking out.

As arewethereyet has stated, getting tested for thyroid and vitamin B12 (pernicious anaemia can be missed) would be a start. I would also suggest iron/ferritin as us wimminz often have woeful levels plus vitamin D. Mineral levels can be overlooked too.

As always it’s worth reading as much as you can, the USA is streaks ahead with knowledgeable doctors whereas the NHS seems to be in denial, certainly concerning non-standard thyroid conditions, Lyme disease, mold etc.

Have a read here:

http://www.drmyhill.co.uk/wiki/Main_Page