Today’s news in the ME world is Distinct Changes found in ME. Just another story in the long debate of is it Physical or is it all in the mind. If the claims are true they are talking about changes found in first 3 years of illness so how does this help those of us who have been ill for nearly 20 years? “ those who had the disease for longer than three years did not show the same pattern.” Also “It appears that ME/CFS patients are flush with cytokines until around the three-year mark, at which point the immune system shows evidence of exhaustion and cytokine levels drop.” I assume that long term sufferers cannot be tested or treated in the same way. It is of course good news for anyone newly diagnosed or suspected of having ME, not sure why we say diagnosed as we keep being told there is no way of diagnosing ME.
I do get rather fed up of these so called break throughs and yes we know what it is now, there seems to be a different theory every week, but then nothing else seems to be said about it. Even if this is THE ONE then any treatment or even formalised testing is a long way off, as the study was quite small and needs to be replicated and proved.
In the words of Dr Charles Shepherd, medical adviser to the ME Association
I have had tests that showed abnormalities and tests that were normal, but nothing is ever taken any further just called insignificant. I have lost nearly 20 years of my life to this stupid illness, it has prevented me being the mum, wife, daughter etc that I should be. It has a huge impact on my family as well as me,
I know this sounds very negative and I wish I could feel happier, but it just feels like another insult and nothing will take away the years of disbelief in the illness and the stigma attached to it.
No amount of stories will change the effect that ME has and what we have to live with each day and how our lives are totally changed.
To comment on this post, please click the header to this article. This will take you to my blog on blogger.com