Long Covid – Struggling In The Aftermath of M.E/C.F.S Neglect and Stigma

Our Managing Director Sally Callow, as a M.E/C.F.S and Long Covid patient, M.E/C.F.S patient advocate, and MD of an online training platform about M.E/C.F.S, is currently collaborating with local public health teams working on their Long Covid strategy. The illnesses are very similar in terms of overlapping symptoms and patient experience (including stigma) and a large percentage (prevalence statistics not currently available) Long Covid patients have now received a M.E/C.F.S diagnosis from their healthcare provider after meeting the diagnostic criteria. We know this because we have ‘spoken’ to many on various social media platforms and after being contacted via email for signposting.
Anecdotally, we are hearing that public health teams around the UK  are looking at using pre-existing mechanisms, policies, and structures to deal with Long Covid with the assumption that these pre-existing processes have historically worked for the M.E/C.F.S patient community. We can categorically state that these pre-existing processes have failed and caused complications for M.E/C.F.S patients for decades. Pre-existing mechanisms, policies, and structures have lead to widespread neglect and stigmatisation of a patient community of over 250,000 people.
These pre-existing processes are why MD Sally founded Stripy Lightbulb CIC and included a training course for healthcare professionals. Only around 10% of medical students receive any training on this neurological disease at medical school. Much of this training wrongly has a psychological bias. Is it, therefore, any wonder that patients with a M.E, C.F.S, or M.E/C.F.S diagnosis are told their illness is psychosomatic or ‘all in their head’? Our e-training is improving a very poor knowledgebase on this type of viral-onset illness. Anecdotally, it is understood that most cases of M.E/C.F.S are triggered by viruses (there are multiple triggers of M.E/C.F.S, viruses are the main one). The neglect patients receive from medical professionals is discussed within this M.E conference video. As M.E paediatrician, Dr. Nigel Speight, explains that patients are additionally harmed by the disbelief and stigmatising comments from medical professionals.
We have been told that public health teams have suggested that pre-existing ‘M.E/C.F.S aware/trained’ GPs are also trained on Long Covid to ensure that Long Covid patients receive adequate support and care.  M.E/C.F.S patients themselves have to ‘shop around’ to find a M.E/C.F.S empathetic GP or even one that believes M.E/C.F.S to be a real illness. It is hard to see how so few GPs can now be asked to look after vast numbers of Long Covid patients. As can be seen in this CMRC2020 video presented by Dr Nina Muirhead  about GPs and training on M.E,, only 11.7% of GPs are confident in diagnosing M.E and 11.9% were confident about managing patients with M.E.

To reiterate – Under 12% of GPs are confident about diagnosing or managing M.E.

We believe that this is entirely down to the lack of training on this poorly understood disease; this is why we have a healthcare professionals’ training course on M.E/C.F.S. We knew this was a big issue for the M.E/C.F.S patient community and it was one we have been tackling since 2018. What we could never have anticipated is that there would be a pandemic a couple of years later that would lead to a new community of chronically sick people being affected by the long term neglect of M.E/C.F.S.
Is it any wonder that Long Covid patients are, in many parts of the UK, being told ‘it’s just anxiety’? The stigma and neglect of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is being harnessed to an equally ‘invisible’ disease by the medical profession.
We believe that if public health professionals participated in our healthcare e-training course they would be able to create new, more appropriate and adequate, processes for both patient communities.
Sign up today via stripylightbulb.com
Together we will bring about social change for M.E/C.F.S (and Long Covid) patients.

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