Una's Blog

 

by Una Hearne.

You’ll have heard of it by now – Long Covid. It is not being called Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME or CFS) yet but the similarities are alarming.

Long Covid is being taken seriously by some doctors but unfortunately not all. There are even medical professionals with this illness facing the same scepticism – from their own colleagues – which people with ME/CFS have faced for decades. Centuries actually.

The whole issue with ME/CFS scepticism is the historic assumption that any illness unknown to medicine at that particular time must be psychological – all in the mind. This has been proven untrue time and again. Multiple Sclerosis for example, was only identified as a physical illness around 30 years ago.

If you, or anyone you know, has Long Covid there are two treatments you may be offered and you should refuse. So please read/share this message.

The two potentially harmful treatments were devised by a group of psychiatrists glued to the mistaken belief that ME/CFS is psychological. Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) were supposed to be ‘cures’. Not only unsuccessful they have in fact harmed patients. Many ME/CFS patients experienced serious and permanent decline as a result of enforced GET. In ME/CFS the energy production system is damaged – the body is unable to make energy properly. Exercising an already broken system causes more damage.

CBT is aimed at convincing the person that their illness is imaginary and they need to recognise this to become well. Trying to convince a person that their experience is not real is called gaslighting and is a recognised form of psychological abuse.

GET and CBT have recently been removed from the official NICE guidelines after decades of heroic campaigning by ME/CFS patients. While this is a significant step forward it will not have filtered throughout the health services and some doctors may still recommend them. This is not the fault of individual doctors. Doctors are already overloaded – the amount of knowledge they are required to learn and retain increases every day with new discoveries. It is not reasonable to expect one human being to know even a fraction of the medical knowledge now available. And there is no mechanism for updating all doctors at the same time. So it does take time for updated information to filter through.

It is important if you have Long Covid to refuse GET and CBT if they are offered and to learn about pacing and rest as much as possible. If you are meeting only scepticism from doctors, please know you are not alone and there are plenty of supports online.

Here are a couple of links – with thanks to Tom Kindlon of the Irish ME/CFS Association – which may be of help:  https://www.meaction.net/stoprestpace/

Click to access MEA-Covid-19-MECFS-Post-Covid-Fatigue-Syndromes-and-Management-November-2020.pdf

Also useful is this book written by a doctor with ME: https://www.amazon.com/dp/1094624691?fbclid=IwAR0CHt3CjTkSBDtJ2pyddDFTMfpDxMRKT0r7jpKUc5ZZOF5PINynUEZAnDk

 

 

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