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Stigma

I just had my PIP reassessment and I'm genuinely sick and tired of people thinking of ME as being tired all the time. I know that research, advocacy and research are probably the only ways to get round this but I actually despise the stigma we have to put up with.
I'm very low functioning but I honestly just want ME to be taken seriously for what it is and respected. I'm a philosophy undergraduate but maybe I should go and do ME research based on phenomenology (the study of experience in philosophy). But I'm super low functioning and also anxiety at actually doing anything unique. What do you think?
Replies
Yep, some conditions really are steeped in misconceptions that reduce them down to just one facet of their reality. I personally think much more needs to be done about M.E. awareness as I know I'm guilty too for associating it largely with tiredness.
As for your idea of doing research, I'm here to cheerlead you all the way. Most research projects are born of something personal and your study would help enhance understandings of M.E. and also could maybe probe why it is not taken serious at a political level.
Would you be interested in doing an MA? It's something to consider and as its a passion project you would no doubt enjoy it and stay interested. Oooh ideas, ideas!!
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When I went to Guy's Hospital in London to see the rheumatologists there, I was told that there's no such thing as ME and that Fibromyalgia is "all in the mind". The most dangerous aspect of this is that they explicitly say that patients with Fibromyalgia should not have any investigations. Thank God that other doctors have not followed these instructions on my medical records. I've recently had scans at another hospital which showed damage in my tendons of the shoulders and elbows. I'm in a great deal of pain and it obviously is not just in my mind!
There are other rheumatology departments all over London who agree with Guy's. So I don't think much progress has been made to help ME or Fibromyalgia patients...