m.e... snubbed by gps and written off !!!

Has your sister joined the ME society? There is plenty of information there and they do update on current research. There are cfs/me specialist services provided but, not everywhere unfortunately. Ask the doctors if there is and can your sister can be referred? I can see how angry you are on her behalf and its great she has such support from you.

Hope what I've said helps

B

Unfortunately a lot of GPs and even specialists I have come into contact with have had this attitude, which sadly makes M.E. even more difficult to live with. I have come to find that unless you live with the condition or know someone who lives with it, people tend to have no desire to understand it. I have done a lot of reading about various theories and treatments etc. One of the things I have found that seems to make perfect sense to me is the research into poor mitochondrial function in M.E. patients. I have mentioned this to my GP and she didn't know such research existed, I am going to try again tomorrow and then speak to the M.E. specialist about it in the hope that there may be something someone can do. From what I have read, I believe that most of the research into the condition has not had much funding behind it, or a large enough 'evidence base' and therefore has failed to be taken into account by NICE/NHS. The whole approach to the condition is absolutely unbelievable, 250,000 in the UK alone are suffering and yet it is so poorly understood. If the government funded the necessary research in order to find a treatment for the condition can you imagine what that would do for the economy! 250,000 people who could potentially go back to work (if the condition has stopped them from working) meaning they could contribute to the economy AND not have to rely on social security. People could work full time again, become successful high earners, relieve the strain on the NHS. I feel so passionately about this as every single person I have met, spoke to or read about with M.E. has such passion for life and so desperately wants to get back to their normal self so they can work hard again and enjoy their life and no loner feel like a burden. It just seems completely bizarre to me that this isn't recognised by government as a huge public health issue. I have been signed off work for almost 3 months now and am about to lose my job because of the condition. After working so hard for my degree to ultimately become successful in my career, I am now looking into my options in terms of social security. To think that this situation happens to so many thousands of people and there is so little support is astounding.

Here are some links to the research I mentioned:

http://www.meassociation.org.uk/2015/04/mitochondrial-dysfunction-and-the-role-of-cytokines-in-mecfs-preliminary-results-from-research-being-funded-by-the-mea-ramsay-research-fund-and-the-medical-research-council-2-april-2015/

http://www.sciencedirect.com/science/article/pii/S221464741400004X

Also, from my experience I have had to request to see specialists such as an M.E. specialist. I am still on the waiting list to see this specialist as there is only one in the whole of Merseyside and Cheshire. They are so few and far between that my GP was not even aware he existed. But my advice to you and your sister would be to look on the Internet, specifically the ME association website and look for the specialist in your area and ask the GP to be referred to them. If nothing else, the referral may at least provide some hope, I feel it has done for me.

Hope this helps x

The Institute of Medicine has recently released a big report summarising the state of affairs, saying that change and more research funding is needed. If interested you could search for 'Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness'.

Psychology Professor James Coyne has recently started picking apart some important poor quality research. You could google that if you're interested in some scandal and excitement.

That people are being more honest about the dire state of medical approaches to CFS is a hopeful sign that things may be about to improve a bit, but it's a distressing thing to come upon for those who have recently fallen ill and expect medicine to be more useful than it is.

Hopefully your sister wll be one of the people who naturally recover (we don't know why) - this does not seem uncommon for people who are only ill for a short period of time (roughly under 18 months, but again, research on this is not great either). I could also be that your sister has an identifiable alternative disagnosis - these can often be missed, so it's worth trying to get possibilities explored and checked out. Best wishes to you and your sister.