It is now starting come out that some COVID-19 patients are suffering long-term debilitating health problems, even since March, making it a potential double-pandemic.
These symptoms resemble ME Myalgic Encephalomyelitis (controversially called CFS Chronic Fatigue Syndrome or Yuppie Flu). Patient stories of post-COVID-19 are emerging all over the internet and world news. Plus, this isn't just affecting severe COVID-19 patients who were hospitalised, but those who were only mild.
This week, Health Secretary Matt Hancock announced that is he concerned about a "significant minority" of post-COVID-19 patients, and has pledged a ground breaking £10million into research. This post-COVID-19 fallout is obviously horrendous for the new patients affected, as well as the devastating number of global fatalities and the economic and social impact. There is also the mysterious Kawaski disease in children, similar to during the SARS-CoV-2 epidemic.
However, could this be a potentially huge breakthrough for patients with ME CFS? There are over 250,000 ME patients in the UK, and twenty million worldwide. So little has been spent on ME research for decades and this mainly focused on psychology ('it's all in your head'), such as the infamous scientifically flawed PACE trial.
Yet there continue to be similar studies, including studies on children (ME CFS is the biggest cause of long-term absence in schools). My concern as a patient and advocate, is that this new post-COVID-19 research will go back to psychology, overlooking identical physical symptoms, patterns and outbreaks since the '80s.
In the past, some of these global outbreaks, e.g. whole hospitals including staff, have simply been put down to hysteria. Surely, this cannot happen with COVID-19 which is a major historical event.
Another concern is the current harmful treatment for ME CFS, which is now being suggested for post- COVID-19 fatigue syndrome. A few weeks ago, Oxford Health NHS FT released a document that was later taken down, saying things like 'Unhelpful ways to manage symptoms following a virus…Resting too much'...But PEM Post Exertional Malaise is key symptom and there is overwhelming evidence that forced exercise has made patients significantly worse, both short and long-term.
The UK NICE guidelines still recommends the two treatments GET Graded Exercise Therapy and CBT Cognitive Behavioural Therapy based on this flawed research. There have even been huge ongoing campaigns e.g. MAIMES Dr Sarah MyHill, Millions Missing, my national Healthwatch project and DevoManc CCG project, and so on.
In fact, the NICE guidelines have been different from the WHO World Health Organisation since 1969, which classify ME as a neurological illness. This makes the UK one the worst countries in the world to have ME or post-viral fatigue, with other countries making significant progress. Norway even apologised publicly nine years ago in 2011.
My final concern is the lack of regulation of the charity sector which is closely linked to this bad inconsistent advice, treatment, research, and influencing the NHS and other services behind the scenes, often with little or no public information. For international and UK news and biomedical ME research, I would recommend the charity www.investinme.org.
8th August is Severe M.E Day (25% of ME CFS patients are house or bedbound), while 12th May is International ME Awareness Day. The same day as Florence Nightingale's birthday, who is thought to have had ME. It has now also become the day of the global yearly Millions Missing.
Read Karen's speeches from the Manchester protests plus other patients' stories – click here
Words by Karen Morris
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