What can M.E/C.F.S patients do when M.E/C.F.S is not acknowledged as being a neurological condition by many medical professionals, the M.E/C.F.S patient community is not considered an ‘at risk’ group during a pandemic, but patients are well aware that any virus can have serious implications on their own M.E/C.F.S?
Two things have been on our radar this week, COVID-19 and the UK CFS/ME Research Collaborative (CMRC) conference in Bristol. The CMRC consists of the Medical Research Council, M.E Association, Action for M.E, Wellcome Trust, National Institute for Health Research and Arthritis Research UK. A variety of different presentations were included in the programme and it would be an interesting watch for anyone with an interest in M.E/C.F.S. Videos of the conference can be seen here on Action For M.E’s YouTube channel.
One presentation was particularly interesting to us as it focused on how medical professionals perceive M.E/C.F.S. See Dr Nina Muirhead’s presentation(16.22 minutes to see GP online questionnaire). Dr. Muirhead asked practicing GPs in the UK to complete an online survey – the results can be seen in the image.
The questionnaire results are worrying but, for the purpose of this COVID-19 blog, we are highlighting that 39.4% of GPs think M.E/C.F.S is psychological/psychosomatic. This is despite the World Health Organisation categorising M.E as neurological in 1969.
If GPs believe M.E/C.F.S to be psychosomatic/psychological, it is highly unlikely that they would expect COVID-19 to have a significant impact on an M.E/C.F.S patient. M.E/C.F.S patients aren’t considered an ‘at risk’ group by the medical profession.
The M.E Association wrote this article this week –
‘As ME/CFS involves immune system activation, rather than immune system deficiency, there is a theoretical reason to indicate that having ME/CFS may not place someone at being at increased risk of developing a severe infection.
But how people with ME/CFS will react to the actual virus remains uncertain – so it is best to err on the side of caution.
Viral infections are a very common factor in causing symptom exacerbation and relapse of ME/CFS – sometimes severe and prolonged. If you do catch this infection, as with any infection, the aftereffects are likely to be more serious.’
As an employer, you need to know that COVID-19 has the potential to have a severe impact on the health of your M.E/C.F.S-affected staff. The current pandemic could cause the severity of their symptoms to significantly worsen for a long period of time and cause them to be absent from work long-term. Only 25% of all patients, those with a ‘mild’ level of severity, are able to work; a worsening of symptoms due to exposure to COVID-19 may render them unable to remain in employment.
To be clear, a ‘worsening of symptoms’ could include being house or bedbound for months, years or even decades.
Whilst M.E/C.F.S patients are not an ‘at risk’ group, we would ask that employers err on the side of caution and treat them as such. Offer the opportunity to work from home if possible and help them to reduce the chances of catching the infection and lower the risk of worsening their severity level.
It is far too soon to know what impact COVID-19 will have on M.E/C.F.S patients but we need to say that M.E/C.F.S can kill. M.E/C.F.S has been recorded as the cause of death on death certificates. Anything that could cause a patient’s symptoms to significantly worsen should be taken very seriously.
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