M.E/CFS clinical primer

[sulamaye]

Hi this may be of use to any of you out there, it covers many of the symptoms we experience and could be helpful to give to a clinician - if they have half a brain!!

iacfsme.org/portals/0/pdf/p...

[Hidden]

Thank you v much Sulamaye - info is great but seems relevant to USA/Canada? If that's where you live it appears you guys are streets ahead of us here in the uk. Very few doctors have very little knowledge of illness and many not willing to stray from the old favourite, if it doesn't show up in bloods or is not visible, it does not exist! I'd be given better support if I had a pimple on my forehead! The fight continues which is very draining.

I mentioned at my last OCc Health meeting that there were new guidelines and that ME/CFS was a recognised neurological disability. I was met by the phrases ... "Oh I don't think so" , "you will recover soon and life will be back to normal", "this is just a blip and will pass". Oh how I wish!!! I do not choose to be bedridden most days!! 6-8 of symptoms before crash then two years of absolute hell and enforced bed rest rest is not my choice of how my life should be! How does he know what my prognosis is if he or dr.s don't offer treatment? Pain clinic management helpful to some extent but is that it? I am on a mission to help myself as my experience of our NHS here in the uk and this illness is one which is unhelpful and tiresome!

Sorry for rant - not directed at anyone but at our beaurocratic health system who cannot see past the end of their noses. . If only they would listen to the patients and look at them rather than at their screens!

Not looking forward to next Occ Health appt on Thursday. Here's hoping I get a different dr who is much better informed!! Best wishes to everyone on their management of this awful disease. I truly wish you all get the support you all need! Jax 💕💕

[sulamaye in reply to Hidden]

I am UK based, just about to brave a tribunal for PIP as am bed bound 50% of day. They are world guidelines and supported with references. Print out and give, but I stopped expecting anything from NHS when the m.e clinic told me 'no one recovers' and were very shocked to be told my partner, standing beside me, had had m.e for 16 yrs but was now totally recovered. Thankfully for me otherwise my daughter Wd have had to go into care ! They should get their stories straight, neither is useful, you will, you won't, we are all different and no one can know either way. I have to say that I do despair of recovering now having spent four and a half years trying everything known and being very positive to start with. My final attempt is methylation under the guidance of optimum health clinic dietician. Which is one of the reasons I need pip, to pay for all the bloody treatments now my savings has gone!

[Hidden in reply to sulamaye]

Let me know how that goes. As you say you will try anything and need all the help you can get! Good luck with pip! I have standard pip and mobility but took advice and slaughtered help with forms beforehand. I think it really depends on which way the wind is blowing as to how they determine your needs! I am still working too but on sick leave arm. Union suggested I apply as I never thought I'd be eligible! Not means tested so at least what I get means I'm not out of pocket for acupuncture, diet and alternative medicines! Other than that they would not be happening. Keep trying everything and keep your chin up. That's all we can do - take care Jax