Global M.E Community Anticipating New Cases After Covid-19

Sally Callow, Portsmouth resident, M.E patient and M.E patient advocate reports on the growing concerns about the implications of Covid-19 as a potential cause of M.E, as expressed by the ME Association and others. Sally is also the founder of Stripy Lightbulb CIC and ME Foggy Dog, which offer training and aim to raise awareness about M.E.

Today is 12th May, International M.E Awareness Day, and we are in the middle of a global pandemic. It seems appropriate therefore to write an article about the implications Covid-19 could have on the global Myalgic Encephalomyelitis (M.E) health crisis.

M.E is also commonly known as Chronic Fatigue Syndrome and the names used for the illness are often combined, using the terms CFS/ME or ME/CFS. For the avoidance of confusion, the illness will be referred to as M.E in this article.

It is likely that Covid-19 will trigger M.E (or a M.E-like illness) in a number of people who contract the virus, whether they had mild or severe symptoms. Previous Coronaviruses such as SARS and MERS are historically known to have triggered M.E. As Covid-19 is a new virus, scientists will not know for sure whether it triggers M.E for a while yet. The earliest a diagnosis of M.E can be given is six months after the onset of post-viral symptoms. The average time patients wait for a diagnosis is one year but many wait at least two years for a confirmed diagnosis. There is no diagnostic test so the diagnostic process is long and drawn out. Everything else has to be tested for and ruled out before an M.E diagnosis can be given.

At the current time in 2020, there is no scientific explanation as to why viruses trigger M.E in some people and not others (M.E affects one in every 500 people).

The global M.E community is not waiting for scientific confirmation that Covid-19 triggers M.E (or an M.E-like illness). As a community, patients, charities and advocacy groups are warning of the possibility and are advising rest as a preventative measure to minimise the possibility of developing M.E or at the very least, to reduce the severity of M.E symptoms in the longer term.  In a year’s time, if we know for sure that Covid-19 triggers M.E, it will be too late to warn people about the need to rest, the damage will have already been done. There is the potential for thousands if not hundreds of thousands of people being left chronically ill as a result of having Covid-19.

Have you ever heard the phrase ‘prevention is better than cure’? In the case of M.E, prevention is the only way forward as there are no treatments or cure.

This is how the potential transition from Covid-19 to M.E will work:

It is widely accepted that some people take a longer period of time to recover from viral infections, they may well continue to feel unwell for up to three months. If this continuation of sickness continues for six months or more a diagnosis of M.E should be given by the doctor. The criteria (there are a few different criteria) for M.E area available from the M.E Association.

Unfortunately, only around 10% of medical professionals have received training on M.E and a majority believe M.E to be psychosomatic. Many GPs and other medical professionals do not know what the diagnostic criteria for M.E are. This often makes the diagnostic process traumatic for patients who are often told it’s ‘all in their heads’.

It should be made clear that rest reduces the chances of developing M.E but doesn’t guarantee avoidance. Our advice to anyone who has Coronavirus, or any other virus, is to rest and not try to push yourself to get better. If the virus has triggered M.E, resting will help to minimise the level of severity that you have. Resting could be the difference between having ‘mild’ M.E and being able to continue working part-time and being ‘severe’ and house or bed bound for years if not decades.

Worryingly, NHS Trusts around the UK are recommending that patients should increase their activity levels to avoid deconditioning. This is the opposite of what M.E advocates, charities and scientists would recommend. This preference for activity is as a direct result of the PACE trial, something I wrote about for Star & Crescent a couple of years ago. The PACE trial is controversial and the NICE guidelines that recommend Graded Exercise Therapy are currently under review. There is an argument that the research study behind the recommendation of increased activity was flawed and should never have been adopted by the UK Government, NICE and other countries worldwide.

This NICE review, which has been postponed, is why the global M.E community is working so hard to tell anyone in the post-Covid-19 phase to ignore any medical advice that says to increase activity. Pottering around your own home should be your limit, light housework should be enough to minimise deconditioning without pushing your energy limits. Even that should only be undertaken if you feel well enough to do so.

NICE state about M.E, on their website, that ‘The physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions.’

They clearly understand the devastating nature of M.E and yet are reluctant to admit past mistakes and remove guidelines that have been flagged by scientists as having the potential to harm patients with the illness.

On 27 March, NICE sent an email to the stakeholders participating in the guidance review, announcing it had been postponed, as follows:

‘During this period of emergency, NICE has adapted its priorities to support the NHS, local authorities and the wider health and social care sector to tackle COVID-19. We will only publish guidance that is therapeutically critical or focused on COVID-19-related issues.

The stakeholders and advisory committees involved in the development of our guidelines include a large number of frontline staff. We know that their priority in this crisis is caring for patients. We do not want to draw them away from this vital work.

For this reason, we have cancelled all guideline committee meetings and we will not be publishing any draft or final guidelines until further notice’.

We would argue that the PACE trial is a ‘Covid-19-related issue’ as the guidelines will be used to ‘treat’ patients after having the virus. This delay has the potential to have a detrimental effect on many people. In the longer term, having more patients with M.E will add an additional burden on the NHS. The UK M.E patient community was at least a £3.3 billion economic burden in 2014/15, and that figure will have grown steadily over time – the M.E patient community grows with around 9000 new patients every year as a result of various triggering factors, but Covid-19 has the potential to make this figure grow exponentially.

Like Covid-19, M.E does not discriminate in terms of age, race, or gender. Teachers and employers need to understand that when they return to work post-lockdown, they may well have a duty of care over M.E patients.

During lockdown, it is relatively easy to rest and listen to your body in terms of what level of activity is appropriate. The pressure to rush back to work or studying has been removed for many. However, once lockdown measures are eased, how many will feel the pressure to return to work or studying, whether they feel back to pre-Covid19 health or not?

Employers and teachers, if your staff member or student has recently had Covid-19 but still is not feeling back to their normal level of health, please do not apply pressure for them to return before they are ready. Doing so will increase their likelihood of being sick over a much longer period of time. The worst-case scenario would be that their health deteriorates to the point where they have to leave employment or education altogether, this is the case with many M.E patients around the world. Surely, it is better to allow them a few extra weeks to recover slowly than potentially lose a member of staff and face recruitment and training costs for their replacement, or for a student to leave education without meeting their potential?

Time, patience, and understanding are required.

Whilst existing M.E patients are not in the most ‘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 viral infection and decrease the risk of worsening their M.E severity level.

It is far too soon to know what impact COVID-19 will have on M.E patients but we need to stress that M.E can kill. M.E 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.

1 in 500 people have M.E, and Portsmouth (as of 2018) has an estimated population of approximately 215,000. That’s at least 430 people with M.E in Portsmouth. Over 250,000 have the illness across the UK and 17-30 million people have M.E worldwide. We are hoping that COVID-19 doesn’t cause these estimated figures to rise even further.

M.E was already a global health crisis. Here’s hoping this ‘hypothetical’ situation doesn’t become a reality.

Find out more:

In 2018, we ran a week-long series of articles by Sally Callow for M.E Awareness Week. We highly recommend the series as a great introduction to M.E:

Star & Crescent: M.E. Awareness Week, Part I: Raising Awareness of a Little-Known Condition

Star & Crescent: M.E. Awareness Week, Part II: What’s in a Name?

Star & Crescent: M.E. Awareness Week, Part III: A Battle for Recognition in Healthcare

Star & Crescent: M.E. Awareness Week, Part IV: The PACE trial – a ‘Medical Scandal’

Star & Crescent: M.E. Awareness Week, Part V: On Female Hysteria and Being Compared to MS

Star & Crescent: M.E. Awareness Week, Part VI: Making the Invisible Visible

ME Foggy Dog is a social enterprise that aims to raise awareness about M.E and raises funds for M.E./C.F.S. research. Follow Foggy on Facebook and Twitter.

Stripy Lightbulb CIC is a social enterprise that offers e-learning about M.E./C.F.S. to professionals (healthcare, education, business) who have a duty of care over M.E./C.F.S. patients.

Featured image by Megan te Boekhorst from Unsplash. Other images with thanks to Sally Callow.

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