Mithriel
Senior Member (Voting Rights)
There are certainly a group of doctors who take a psychosomatic view. However, I know of many physicians who do not. They simply do not know how to start explaining ME. They accept that it is disabling but that does not help in working out how to help.
The BPS approach causes a lot of distress but it isn't the reason we don't understand ME. In the 1980s a number of physicians tried to study biomedical aspects of ME/CFS and found nothing. They genuinely tried. And as is so often pointed out there have been about 9000 papers since trying to find things. The London School of Hygiene CureME team were awarded about $2M to look again for biomarkers and came up with little or nothing.
That is not what I meant, I was talking about day to day medicine. Doctors may not know much about ME but I should have been able to go to see a doctor and be asked what symptoms I wanted to talk about then they should have been noted including any changes from last time and if there was anything that could be done for them. Most of our symptoms are shared by other diseases so anything which helps them in, say, MS should also be done for us.
Instead, I never discussed my ME with a GP after diagnosis. Sometimes I would ask for something or see if some new thing was ME or not but it was never about my ME or how it was affecting me. My GP retired and I took the chance on talking about my ME with the new doctor. It was a chance because I did not know what she thought about ME. It was just as likely that she would stop a my medication as she would help me.
It was a genuine fear. In the early days of my diagnosis before CFS was invented my then GP said that I was likely to hear about new treatments before him and also if I wanted to talk about anything book the last appointment of the day. I did this and some things he agreed to and others he did not with a brief explanation.
Then he left and unknown to me the new GP was BPS leaning and interpreted my continuing to do as before as a sign that I was seriously hysterical ...
It shocks me when I discover that some things are taken seriously. I was referred to ENT with hearing problems and it was a taken seriously with a history being taken and an examination. Friends and family talk about get treatment for symptoms I always thought you were just meant to thole.
Basically we should be able to get exactly the same service that is provided for MS and RA even if there is no massive research about cause; something is wrong with our bodies and the medical profession deals with broken bodies. There is a lot that can be done for us as things stand. The submission to NICE from s4ME would be a goods place to start.
Longcovid could be treated the same way, symptomatically but above all sympathetically with no dismissiveness.