M.E, Long Covid, and the Mental Health Crisis.

I have been pondering how the push to label Long Covid as a psychosomatic condition, and the incessant eagerness of some to see CBT as a ‘treatment’ for this kind of viral-onset illness, will impact the already overwhelmed mental health provision in the UK. There are a number of factors within my pondering.

1. Psychologists/psychiatrists have accused M.E patients of being reluctant to accept a psychological diagnosis because of the attached stigma. This is simply not true. We are anti-psych because it is not an appropriate approach for our biological/neurological disease. As a global patient community we are stigmatised ourselves. I would argue that our stigma is mostly of psychological invention and has been exacerbated by neglect. The stigma surrounding mental health is not a factor in why we say M.E is not a mental health issue.

2.  Mental health services in the UK have been stretched, if not overwhelmed, for years. That situation will have worsened significantly due to the pandemic. Yet, currently in 2021, many hundreds of thousands of M.E and Long Covid patients are being inappropriately referred to ‘talking therapies’ for CBT. The National Institute for Care and Excellence (NICE) in the UK said in their guidance review (first draft) in November 2020 that CBT should not be offered as a treatment or cure for M.E. I would be very surprised if the same is not said for Long Covid in future guidance policies.**To be clear – CBT should be made available to those patients who want it/feel they would benefit from it**

Does it make sense to anyone other than me that mental health charities, and the M.E and Long Covid patient communities could work together to alleviate this situation? Tackle inappropriate and needless referrals to mental health support and free up time and staff to deal with patients who need support. Well over 250,000 have M.E in the UK. 1.1 million had Long Covid in the UK in April 2021. If even 50% are referred (and referrals are accepted by patients) – That’s a heck of a lot of people who will, at one point or another, be referred for CBT. I was offered CBT by my Long Covid clinic, I declined the offer as I had CBT a decade ago for M.E and it had limited benefits for me personally.  I would have been referred to my local talking therapies centre which, prior to Covid19, had a 2 month+ waiting list, CBT is not offered in-house within the Long Covid clinic.

3. As with the wider population, there will be M.E and Long Covid patients who also have separate mental health issues. But mental health support shouldn’t be routinely offered to all M.E and Long Covid patients who simply don’t need it. This makes it a cost effective tick box exercise. ‘Look! We’ve given ‘treatment’ to this many Long Covid and M.E patients!’ However, for most, it’s not ‘treatment’, it simply makes the patient feel less guilty about being chronically sick, at best it can be used as a management tool. It is true that gaslighting, neglect, and stigmatising of M.E patients has lead to anxiety and PTSD but mental health issues are secondary to the neurological disease. Could charities from the different communities work together? I would suggest to charities such as Mind and Heads Together  that tackling this issue would decrease unnecessary referrals and lower the burden on overstretched services.

4. The Wesseley Review  Sir Simon Wesseley (and a small group of his psychology/medical friends) and the M.E patient community ‘have history’. He is now leading the review into mental health reform, whilst at the same time pushing the narrative that Long Covid is psychosomatic and the result of ‘false sickness beliefs’. He is one of a small group of psychologists/psychiatrists pushing for Long Covid patients to receive CBT as a ‘treatment’.

I fear the ‘mental health crisis’ and demand on support will be wrongly and inappropriately much bigger than it has to be. Long Covid is not a psychological condition, neither is M.E.

Should different communities, social enterprises, and charities work together on this?

Love Sally

and Foggy (obviously)


ps. Have you listened to our latest FogPod episode yet?  (Subscribe to our Spotify channel and never miss an episode! Link and episode below)

‘Musings About UK M.E Charities’