Article: We Might Have Long Covid All Wrong (covers FND,ME/CFS,includes Sharpe,Garner, Carson and more).

And why wouldn't they. They clearly still have sufficient political power to brazenly pervert and bulldoze their way through every attempt to hold them accountable and restrain them.

Their only concession so far has been to tweak their sales pitch a bit. I doubt that makes any practical difference in the clinic or to the lives of patients.

 

Thanks again for continuing to respond on this.

Blood tests are not a sure way to diagnose epilepsy:
Blood biomarkers in epilepsy, 2022

So, blood tests are a long way from being a foolproof method to diagnose epilepsy. As I wrote in a post above, other methods of diagnosing epilepsy are also far from perfect, including EEGs. I don't think the inadequacy of tools to diagnose epilepsy is in dispute. So, we are left with a diagnosis of a functional disorder by exclusion, and by the clinician's experience. I understand that there might be a very rare person who is faking epileptic seizures and clinicians might be able to pick that up, but I still can't see what evidence there is for the existence of psychosomatic seizures. Are you still completely confident that the people you saw diagnosed with functional seizures were having functional seizures? Perhaps functional seizures do occur, but I don't understand how you can be sure. And, if you can't be sure, should that uncertainty not be conveyed to the patient?

I do understand that, for sure it is true. But, at the same time, people with ME/CFS have suffered at the hands of clinicians who feel that their experience trumps evidence, or that there is no need for evidence. To quote a recent tongue in cheek post on the Humour thread:

It's great that you have seen hours of time spent ruling out other possibilities before a psychosomatic diagnosis is made. As others have said, that is certainly not the case all of the time. People can be diagnosed with psychosomatic disorders with no investigations at all. In the case of those people you came across who were diagnosed with functional seizures, did they all get given the more invasive forms of EEG that can pick up seizures in the deeper layers of the brain before they were diagnosed with functional seizures, or was there just a reliance on scalp EEGs?

In Australia, my son saw a psychologist with the aim of getting him some support to cope with the sudden losses when he got ME/CFS. He didn't really need or particularly want the referral, but 10 free sessions with a psychologist was one of the few things our GP could do, and so we thought, 'what harm can it do?'. The psychologist diagnosed my son with conversion disorder (another name for functional disorder), despite there being no history of significant trauma of any sort and my son being very content with his life at the time he became ill. Perhaps that sounds unlikely; I probably would be skeptical if I had not experienced it. But, that's all it took - a psychologist who believes that the symptoms of ME/CFS are symptoms of a functional disorder, and, bam, you have 'conversion disorder' in your medical record. I know of a young person in New Zealand who was, fairly recently, told at a pain clinic that her ME/CFS symptoms were because of a functional disorder.

As you acknowledge is the case in ME/CFS, sometimes biomarkers of non-psychosomatic pathology just can't be found with the level of effort that a reasonably diligent doctor can arrange. What should be done when there are no signs to indicate an alternative diagnosis? Does it come down to the experience (and prejudices) of the clinician? What chance does a person with a history of mental illness diagnoses, school truancy and maybe some confrontations with people in authority have of avoiding having their reports of physical symptoms in the absence of biomarkers being labelled as a functional disorder when my son, who liked school, was liked by friends and teachers and was psychologically well, could not?

The thing is, very often clinicians don't have to prove things.

I just want to note that I know psychiatrists often get given a hard time on this forum. Many of the strongest BPS proponents are, in fact, not psychiatrists. And there are a number of reports from members that a psychiatrist believed them when they said their symptoms weren't psychosomatic and wrote a report to say just that. And that that report made a huge difference to the way they were treated in the medical system. A good psychiatrist can really help.

 

That's really sad. That must have been terribly isolating and difficult for you.

You are right. I find it frightening to hear how deep and wide the belief in ME/CFS as a functional disorder, and functional disorders in general runs within the medical system in Australasia, particularly as, after 5 years or so with ME/CFS, I stopped hiding that I have it. It is uncomfortable to feel judged, and there might even be serious consequences to have the label. I think it must be a bit like being gay in my country about 20 years ago.

My son never told anyone at his university, any of the lecturers or his honours thesis supervisor, that he has ME/CFS, not at any time during the four years of his degree, even when some minor accommodations would have helped a lot. People should not have to feel ashamed of being sick. Perhaps the numbers of medical professionals getting Long Covid will help change things. In the meantime, I think being open about having symptoms that amount to ME/CFS is a political act.

 

And terrified of the consequences of trying to discuss it with doctors.

 

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