Covid-19 and ME

From the time that the term "self-isolation" began to be used in relation to the current pandemic it was already quite obvious to anyone who has been living with ME for any length of time that the general population would soon find themselves experiencing one of the consequences that people with ME and their families have had to endure - often for many years.

Indeed, self-isolation has so often seemed to be the government policy to ME patients for a generation - if they cannot see it then they do not have to deal with it.
With pandemics it becomes a different story.

Events have changed everything and now we live in different times.

Countries around the world are restructuring their healthcare systems, and economies, to tackle Covid-19.

Drug companies are performing clinical trials and offering products, almost immediately – example https://www.arabnews.com/node/1643141/world?fbclid=IwAR204loDRuvqg2hkhRnHQBIWQd_0U21dr91qzCkBimhGetWw6XXyY34ZRbc

Drugs that have existed for a while are being tried in expedited research projects.

Research establishments can map an immune response to a virus - https://www.reuters.com/article/us-health-coronavirus-australia-research/australian-researchers-map-immune-response-to-coronavirus-idUSKBN2140KA

The DWP is to suspend face to face assessments for disability payments ESA and PIP (and universal credit), for three months https://www.gov.uk/government/news/face-to-face-health-assessments-for-benefits-suspended-amid-coronavirus-outbreak

The media have no problem in covering the pandemic and bring forth a plethora of stories and opinion pieces as to what effects of self-isolation have on people – missing the irony that sections of the population have been forced into doing this for decades due to lack of attention, funding for basic research and ignorance by the media.

The EU mobilises to stop the virus and scientists are joining together on basic research with drugs & a vaccines being tested.

If any government or research agency or chief medical officer had ever used the excuse of lack of funding or to explain the negligent policies toward ME over the decades then the current pandemic has put a lie to all of it.

All of the above have been denied, even in small part, to ME patients.

The amount of funding now available for all sorts of measures has been eye-watering.
This funding has been found immediately – even without agreement on what strategy to employ to fight the pandemic.

As has been pointed out the lack of funding for NHS was never a problem.
The years of austerity were never a necessity.
The negligence behind treatment of ME has never been excusable.

How is it possible that a disease such as ME can be neglected and abused for years by governments and establishment health councils and poorly treated by clinical excellence organisations – and yet when an urgent requirement such as Covid-19 comes along then money is available and attention is given?

Of course, all could have been done before

Not often that we publish any Lancet news but this article is relevant - https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)30727-3/fulltext

It is interesting to make comparisons between the current situation with COVID19 and ME.
The way some COVID19 patients describe their symptoms and how the illness effects their daily functioning is so similar to the way infectious onset ME patients have described theirs.

The Australian Hickie et al study (https://www.ncbi.nlm.nih.gov/pubmed/16950834) “Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study” concluded -

“A relatively uniform post-infective fatigue syndrome persists in a significant minority of patients for six months or more after clinical infection with several different viral and non-viral micro-organisms. Post-infective fatigue syndrome is a valid illness model for investigating one pathophysiological pathway to chronic fatigue syndrome.”

We are now seeing numerous studies being set up to try to find out why some COVID19 patients become severely affected and others have only a mild illness or no symptoms at all.

Prof Thomas Hart, respiratory sleep and critical care director from Guys and Thomas Hospital tweeted (https://twitter.com/NickHartThorax/status/1244390001875529728?s=20): “#COVID19 is this generation's polio. Patients have mild, moderate and severe illness

#COVID19 is this generation's polio. Patients have mild, moderate and severe illness

Large numbers of patients will have physical, cognitive and psychological disability post critical illness that will require longterm management

We must plan ahead#recovery #rehabiliation

— Prof. Nicholas Hart (@NickHartThorax) March 29, 2020

Large numbers of patients will have physical, cognitive and psychological disability post critical illness that will require longterm management

We must plan ahead”

The irony of this realisation of the effects of a post-viral condition by more people is a bitter/sweet recognition of what people with ME and their families have faced for a generation - with little scientific support and government inaction.

When enough people are affected, when personal and political wealth is threatened then solutions, and resources, become readily available.
So perhaps the effects of Covid-19 may change the landscape for research into ME.
Altruism and self-interest are often intertwined.

We can only hope that current and future ME patients will benefit from the surge in COVID19 research.

In some way the stigma that certain organisations and the media have promoted around ME to influence research funding or boost careers may subside.

For COVID-19 international collaboration is necessary and has started.

For ME we have always maintained that international collaboration was essential with research into ME.

The positives from this situation for ME are that new funding will surely be given for research into this virus.
However, it is likely that the consequences of vast amounts of people suffering from post-viral symptoms that subsequently may become ME means that ME research may well be given more funding, if indirectly.

We hope that the establishment of EMERG and EMECC will provide opportunities to create some benefit for people with ME from this situation.