FII and Perplexing Presentations: What is the Evidence Base for and against Current Guidelines, and What..., 2022, Gullon-Scott and Long

It is a bit of a Catch-22 situation. No one is examining these disorders properly so patients have to try to diagnose themselves or turn to private practitioners who are off the mainstream. Armed with answers from these sources patients try to tell mainstream doctors there really is something wrong but the long lists make those same doctors reject the patients even more.

I have noticed it too in other situations where the patient keeps saying how bad things are but it just comes across as exaggerating and being neurotic and needy. No one can believe that someone is so sick and nothing is being done.

All these things come down to the medical profession, or at least some sectors, being too quick to dismiss anything the patient says.

I kept asking my GP if I had Parkinson's disease or MS or was this important or that a sign of pathology. She decided I was hypochondriac but could not see that I had one set of symptoms that were not being treated. I was seriously ill with no answers so it was inevitable I asked about things. It should not have been a guessing game for me, all she had to say was that medicine did not understand every disease and she would give me symptomatic treated where she could.

 

Sorry, but I disagree. The geneticists have a clear understanding of EDS which has been completely messed up by practitioners who should know better - very often with private practices but also pseudo-academic empires. The genetics of EDS have been subject to extensive research. The problem has nothing to do with not examining properly.

Things come down to certain members of the medical profession being too quick to bullshit.

 

Too early to say but there are some interesting comments here* re a potential cause of ME/CFS uncovered by a genetic study (GWAS) --- something like this, an intracellular problem, wouldn't necessarily give an easy to detect signal in blood or whatever. To be honest I think something like this would explain a whole lot of complex/poorly understood diseases e.g. psychiatric illnesses.

I've been a little frustrated, at times, that some medical folks don't seem to see common ground with patients/family members; i.e. patients want diagnosis, and treatments, and doctors (presumably) want the same. So based on that common ground, doctors e.g. could support patients in lobbying for research funding to understand the underlying disease pathology (with no-one defending any particular prejudiced opinion). An example of welcome/constructive effort is the MRC convening an expert panel to identifying promising research areas into ME/CFS - the result Chris Ponting's GWAS study was funded. So often the "dialogue" seems to be patients and doctors arguing --- doctors defending the indefensible (unevidenced treatments) and patients demanding the indefensible (unevidenced treatments).

I'm extremely grateful for the dialogue on this forum --- OK I may be missing the point a lot of the time!

*https://www.s4me.info/threads/genet...ential-risk-loci-2022-hajdarevic-et-al.25070/

 

No, I am agreeing with you, you know about joints. It is just that if no one is looking for the correct diagnosis people will latch onto that sort of thing because it is all they can get.

If someone is sick and they are told it is because they have a disturbance of their chakras they will feel relief thta there is an explanation at last. Then they say that to their GP and are met with scorn which makes them turn to alternative practitioners even more.

Before they have a contested illness people assume that if they get sick they will go to see the doctor get sent for tests get told what they have and what they should do. People do not start with weird ideas that comes later.

 

Back in 2013 a retiring doctor said my severe ME could be psychological, when I replied that's not evidenced based medicine, he replied "Medicine is an art not a science".

 

It is interesting to see people so ignorant.

Science and evidence are two quite different concepts. My first degree was in Art History. Art History makes better use of evidence than medicine but that does not make it a science. It just makes it reliable - which is important for those investing millions of dollars.