My Experience of ‘Long Covid-19’ as Someone Living with M.E

Local resident and founder of Stripy Lightbulb CIC, Sally Callow, shares her experience of ‘long Covid’ as someone living with M.E and explains growing concerns that for many, Covid-19 may trigger M.E.

As a M.E patient advocate, I understood that a pandemic had the possibility to cause long-term challenges for many people. Most cases of Myalgic Encephalomyelitis (otherwise known as Chronic Fatigue Syndrome C.F.S) are triggered by viruses of one sort or another.

I wrote an article for Star & Crescent to mark M.E Awareness Day on May 12th, but what I did not mention in it is that I had experienced ‘suspected’ Covid-19 myself since 23rd March 2020, the first day of lockdown in the UK. I am still on the Covid-19 rollercoaster ride today, over four months after the acute infection.

I had been extra careful with my day-to-day routine since February. I had been practising good hand hygiene and social distancing for weeks; face masks were not recommended in official Government guidance in March. I was aware that any virus could have a significant impact on M.E patients in terms of M.E severity level. There is always the risk that patients will change from being a ‘mildly’ affected patient to being severely affected and wheelchair- or bed- bound.

My experience of ‘suspected’ Covid-19 has not been confirmed by a test. Tests were not available to anyone ‘treating themselves at home’ back in March. The symptoms were initially so similar to my usual M.E experience that, at first, I wasn’t sure if it was an M.E flare, a 24 hr bug or Covid-19. After a few days, it became clear that this was something new I’d never experienced before. Some of the symptoms were odd, like feeling I had been standing too close to a BBQ and breathed in smoke. After talking to a number of Covid-19-affected M.E patients online I realised that this was a common sensation.

Having M.E means I have a poor memory so I began keeping a log of symptoms and fluctuations, in part to help the M.E patient community understand what to expect if they also caught Covid-19, but also as a point of reference for myself. I shared my daily symptom log with the global M.E community in the form of a blog. I had a feeling that I would forget symptoms or other aspects of my Covid-19 experience over time, and how right I was! I am finding now (in July) that I have to refer to these notes during consultations with my GPs or nursing staff. I also emailed my symptoms log to my GP surgery to be included in my medical notes. I had followed official guidance and not contacted my GP for the first 6 weeks of being unwell with Covid-19, so my GP was unaware I had been struggling at home and making regular calls to 111.

By the time tests were available – eight weeks after my acute infection – my test came back negative as too much time had passed. I had another test at Queen Alexandra Accident and Emergency in week 12 when I was in pain, having issues with breathing, and worried about blood clots in my chest and lungs. Again, that test was negative. I have yet to take an antibody test as I have heard too many reports of the tests that are available to the public being unreliable.

I am fully aware that there are tens of thousands of ‘Long Covid’ patients spread out across the UK. The Huffington Post report:

It’s thought around 30,000 people in the UK could be impacted by a prolonged version of the illness – what some are calling ‘long Covid’. These people are months into their recovery from the virus and still fighting a range of persistent symptoms.

There are now over 13,000 members in the ‘Long Covid Support Group’ on Facebook, and over 100 members of a specific M.E patients with Covid-19 support group. These online support groups are a lifeline when help is not available in the real world in terms of treatment or support.

I wrote to both Portsmouth MPs on 27th April to ask for their help in bringing about clear messaging in terms of Covid-19 and the possibility of chronic illness. Penny Mordaunt (Portsmouth North) MP’s staff forwarded my concerns to the Department of Health. As yet, I have received no reply and seen no change in messaging. Stephen Morgan (Portsmouth South) MP’s staff have yet to address my concerns.

Clear messaging needs to highlight that previously fit and healthy people of all ages are struggling long term with Covid-19. The World Health Organization’s message so far has been that anyone with a ‘mild’ case of Covid-19 will recover within 14 days. That is simply not the case for thousands of people. It’s not a black and white case of dying or recovering. There are now a significant number of people in the grey area in between.

In terms of the number of Long Covid patients who may go on to develop M.E, it is becoming clearer that there are different types of ‘post-Covid syndrome’. I believe that around 10% of Covid-19 patients will develop M.E (or an M.E-like illness), based on other pandemics such as SARS.

The ME Association report:

In very simple terms it’s probably helpful to divide post/long-COVID syndromes into three defined groups – although there is quite a lot of overlap and not everyone will neatly fit into any one group’ [see the link above for details of the 3 groups].

  1. Post-COVID intensive care/hospital care syndrome

  2. Post/Long-COVID Self-Managed Syndrome

  3. Post/Long-COVID Fatigue Syndrome and Post-COVID ME/CFS

As I write this, I am still experiencing breathlessness and Covid-19 symptom fluctuations, so I think group two is the best fit for me. However, so many Covid-19 symptoms mirror M.E it is very hard to tell! In month four, I am continuing to have secondary infections in my lungs and kidneys, breathing difficulties, an occasional dry cough, rib/chest/lung/lower abdominal pain, temperature spikes, tachycardia, and ‘new’ severe headaches. These are noticeably different to my usual M.E experience.

Lockdown continues for me regardless of the Government guidelines. I am finding that the smallest amount of exertion is causing ‘air hunger’ (I was diagnosed with ‘post-Covid-19 asthma’ this week) and significant M.E/Covid19 ‘crashes’. I still have hope that I will recover from Covid-19, but in my case it might be my M.E that is causing a much longer recovery time.

In terms of ‘Long Covid’ in Portsmouth, my GP confirmed that they are seeing patients with lingering ‘suspected’ Covid-19 symptoms and I recently contacted the Portsmouth Chronic Fatigue Syndrome Service (based in St Mary’s Hospital) via Twitter to ask if they had received a spike in referrals.

They told me that:

No, we haven’t yet but are anticipating we may have an increase in referrals over the coming months.

One good thing to come out of Covid-19 is that the National Institute of Care and Excellence (NICE) have listened to M.E organisations and scientists’ concerns about Graded Exercise Therapy (GET) as ‘treatment’ for anyone post-Covid19. They have issued a statement to say GET should not be used in relation to Covid-19. Whilst it is frustrating that NICE have not changed their guidance about GET in relation to M.E (we have to wait for the guidelines review in February 2021), I am happy to see that GET has been recognised as potentially harmful to patients post-Covid. Unfortunately, any post-Covid-19 patients who go on to develop M.E will still have GET recommended to them as ‘treatment’. The global M.E patient community is advising anyone with Covid-19 to rest as much as possible and avoid exercise or over-exertion.

The public need to know that previously fit and healthy people are becoming chronically sick from something that many are calling a hoax or ‘no worse than flu’. The current Government obesity campaign will hopefully reduce the number of deaths from Covid-19, but unfortunately, obesity is not a factor in becoming chronically sick as a result of the pandemic. The UK has just passed the 300,000 confirmed Covid-19 cases mark. This figure does not include the thousands of Covid-19 patients who are not included in statistics as tests weren’t available in the first few months of the pandemic.

The M.E patient community usually grows by around 8000 patients each year in the UK due to viruses and other triggers, and Covid-19 is highly likely to increase our patient numbers significantly. Only time will tell how much of an impact this pandemic will have on the prevalence of M.E worldwide.


Image by cottonbro from Pexels.

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