One possible reason the CBT/GET proponents misunderstood ME/CFS so badly

[JemPD]

I forget the references, but isn’t it generally said that there is a 40% misdiagnosis rate (false positive) with ME/CFS, which means there are a lot of people out there who have been told they have ME/CFS but don’t actually have it. Having said that any research study should be checking the diagnosis of their subjects.

but that brings me back to the original point... it depends on the dx criteria.

they do all check the dx i think, but if you check it via Oxford criteria, the misdiagnosis will never be picked up unless its rank

 

[Mithriel]

McEvedy and Beard had done work on mass hysteria among schoolchildren. They looked around for another research project and lit on the Royal Free where most of the patients were female. They homed in on ME to help themselves, no looking at patients and trying to help them.

In 1984 The CDC got a request from a local doctor in upstate New York about an epidemic among his patients that seemed to be spreading from schoolchildren to their parents. He did not know what he was looking at so he contacted the CDC. They never replied.

The same year local doctors in Incline Village, a resort town at Lake Tahoe, also contacted the CDC about a similar outbreak. This time two young investigators from the CDC decided a few weeks at a resort would be fun so they went.

When they reported that it had started among teenagers, Stephen Strauss who was trying to prove that EBV caused a long term fatiguing illness, took over and we ended up with CFS. Again, ME was used to forward someone's theories not to help patients.

The UK psychiatrists saw CFS as a good way of getting money for research into this new form of fatigue. Most diseases have fatigue so there was a big market for any treatments. They were soon involved with insurance companies and on a gravy train for life.

There have been many doctors and researchers who have started from compassion for patients and a desire to look at the disease and try find the cause and treatments, but they have continually been drowned out by well funded BPS adherents.

It is not out of any conviction that what they are doing will help us. If it was they would have tried to find out what we actually experience and maybe feel a twinge of doubt when so many of us have not improved over the past forty years.

I can see why people coming in at the point where the present situation is an established thing but it all happened like a hostile takeover, not the way other diseases have developed over the years.

 

[Ash]

Yes @Mithriel this is it. It wasn’t a mistake.

ME has had a rough ride it’s true some illnesses have been treated better overall. But also I think it is treated very much as many others are and have been before it.

Although some diseases have had a clearer pathway in the search for science that leads to care and treatments that actually help, many haven’t.

In terms of vested interests ME and creation of CFS are quite extreme examples. But people are treated terribly due to attitudes of the dominant social class everywhere still today.

Medicine and psychology are very much in on the ground perpetually perpetrating harm. Still today people are being given electro convulsive “treatment” for depression and electric shocks for autistic children and adolescents, to make them behave less like they are autistic. All this is in keeping with the history of medicine.

The medical experiments on enslaved people. Robbing a paupers grave for anatomy studies. Using executed peoples bodies for dissections, and in those days if you were poor it was easy to find yourself hanged. Throwing unwanted wives into asylums to be lock up for life.

Then later experimental tests of outcomes on or withholding treatment from black people. The whole history of modern medicine, psychiatry or psychology is abuse after abuse and exploitation resulting in accolades and influential positions for those wrong doers.

A system built upon foundations of racism sexism, dis/ableism, and disgust emanating from
its functionaries for their social inferiors, the poorest or working classes with any lesser educations than the professional dr class.

The mistreatment of people with M.E is part of a long and still proudly defended tradition. Where authority to grant or deny access to care is wielded as it always has been.

Use it or lose it. It’s their power, and they don’t intend to lose it. For everyone entering the category of ‘the deserving poor’ or patient if you like, there must necessarily be others. Discarded and excluded. The excesses.

We drew the short straw on this one boys and got sick when apparently we are the cautionary tale and the not deserving. We all have something that they perceive as a ‘woman’s disease’ and we are being uncooperative in not joyously recovering the moment that they commanded us to. So this beatings gonna be a bad one.

When it comes to this being a profitable grift, it always has been. But as the only show in town many of those looking to help and to heal are co opted into it.

Like any oppressive organisation within it there are individuals who do not see it for what it is. There are different motivations for joining such organisations. There are individuals who thought they could change it for the better and may find that they cannot. There are individuals who fight and advocate for their patients. But there are more who accept the system and reinforce it.

 

[Mithriel]

I think ME has been treated worse than other diseases is that their stated agenda was to make it disappear. CFS never included the ways in which my body didn't work so not only do doctors not have a treatment they refuse to believe the things that go wrong when I tell them.

I have been sick for 55 years and in that time I have been offered one thing to treat my ME, an antiviral in 1984 when it was still ME I had.