Dear Friends
Thank you for reading my blog.
Recently I heard of two separate incidents where ME patients were treated fairly disrespectfully by specialists.
One ME patient was told she has become scared of exercise and the other that he should rather enjoy his retirement, dismissing his chest pains as not real.
The young woman was told to do CBT (cognitive behavioral therapy) and if that didn't work it meant her ability to get better wasn't working. The neurologist also told her she had FND (functional neurological disorder). The shocking part was that the neurologist used a criteria which has long been shown to be incorrect.
The man who got told by the cardiologist that he didn't have chest pains is not young anymore and is very intelligent and well spoken. He is also extremely well informed of all the latest research on ME. However, the moment he mentioned ME to the cardiologist everything changed. He was no longer viewed as a patient with a valid complaint.
Dr. Klimas found that the increased incidence of PTSD was attributed to the poor treatment of ME/CFS patients by the medical community, as well as the stigma surrounding the illness and the general lack of support patients receive. (Nancy G. Klimas, MD, is an American researcher and physician who is the Director at the Institute for Neuro Immune Medicine at Nova Southeastern University in Miami and Ft. Lauderdale, Florida)
ME is still being stigmatised across the world and the same is now happening with Long Covid. There are many reasons for the stigmatisation. It is ludicrous as the number of SCIENTIFIC EVIDENCE that ME is a multi system PHYSICAL illness is overwhelming. However, there is a school of thought not wanting to let go of their incorrect and harmful approach. It has been alleged that some doctors are working with insurance companies. Imagine what will happen to the insurance industry if there are suddenly millions of new patients who need treatment. Isn't it much easier and so much cheaper to say these illnesses are "in patients' heads" and CBT is the preferred course of treatment? Strange that the doctors who keep on fighting for ME to be seen as a psychological illness are mostly psychiatrists.
They clearly haven't learned from the chaotic PACE trial, as a MP in the UK said it was probably the biggest medical scandal of the century. Unfortunately there are "specialists" who were involved with this infamous PACE trial and just can't let go. They are clinging to the so called results of the study which was found to be so full of errors it is mind blowing that they still show their faces in public, let alone resisting progress.
Most doctors don't have time to follow all the developments across all illnesses and they then tend to stick to what they once heard or read on a certain topic. This I can understand. However, why then when they are presented with evidence do they still choose to stick to their old beliefs?
Is it arrogance? Is it a fear of trusting science? Is it the perception that they are in a superior position to their patients, despite some patients being much more informed on their illnesses than the doctors? Do they realise how many patients they have treated unfairly, how many they have dismissed, probably hurt, maybe even caused damage? If they accept they were wrong, will it open pandora's box for them?
My questions to doctors are:
When you see patients who tell you they have ME, do you want to get rid of them as quickly as possible? Is that why you dismiss the patients, why you are condescending towards them? Is it the reason why you refuse to validate their symptoms? Are you hoping they will not return to your practice? If they return and your advice for treatment hasn't worked, where does it leave you?
Don't get me wrong, I have huge respect for doctors, especially those who aren't afraid to say "I DON'T KNOW" or "I can't help you but let's find someone who can"?
Dear Doctor, do you know that multiple sclerosis was viewed as fakers disease not that long ago? So isn't it possible that other illnesses are being viewed wrongly? The number of ME patients and recently Long Covid patients leaving doctor offices in tears and being truly traumatised is shocking.
There is so much scientific studies out there, so much progress has been made and since the start of Long Covid there is renewed interest in post viral fatigue illnesses. Why the resistance to change from the medical fraternity side? From an advocacy perspective we as a Foundation and ME community try to reach out to as many as possible health care practitioners and share the latest research and treatment guidelines.
We can only hope that more and more health care practitioners will accept the science and amend their views on illnesses such as ME/CFS, Long Covid, Fibromyalgia, etc.