George Monbiot in The Guardian
This is a brilliant video from George Monbiot – thank you so much!
Dr Charles Shepherd MEA
Good timing as well – because the APPG on ME will be discussing the overlaps between ME/CFS and Long Covid next week
Here is a link to an article that appeared in the Guardian 14th April
WHAT IS LONG COVID? IS IT THE SAME AS ME/CFS?
We currently estimate that around 10% of people who catch Covid-19 are going on to develop some form of Long Covid – a diagnosis that can be made when someone remains symptomatic and unwell 12 weeks after the onset of the infection.
At present, we have no firm indication as to how many people are experiencing persisting ill health following COVID-19. However, if current estimates of around 10% of people who were home-managed are remaining unwell after 3 months are accurate, this would translate into well over 100,000 people with some form of significant post covid ill health that has persisted beyond 3 months.
The latest data (March 2021) from the Office of National Statistics (ONS) indicates that:
- One in five people were still symptomatic at 5 weeks after the start of the initial infection – approximately 1 million people
- One in seven were symptomatic at 12 weeks – approximately 700,000 people
- Around 70,000 people were still symptomatic one year on from the initial infection
- In 20% of cases this was having a significant effect on day-to-day activities
- Post-covid ill health was more common in people working in health and social care professionals
Most of the people with Long Covid that we have been dealing with at the ME Association over the past year are previously fit (some very fit) young adults in their 20s to 50s. But we are also starting to hear about children and adolescents with Long Covid. People with Long Covid have nearly always been self-managed at home during the initial infection. But we are also hearing from people who have been managed in hospital.
As with ME/CFS, there is a significant female predominance and there appears to be the same overlap in some cases with mast cell activation sydrome (MCAS).
Long Covid has a number clinical and pathological features that overlap with PVFS and ME/CFS.
A significant proportion of people with Long Covid have a cluster of symptoms – activity-induced fatigue, myalgia/muscle pain, cognitive dysfunction/brain fog, dysautonomia (ie problems with regulating pulse and blood pressure), headaches, poor temperature control, post-exertional malaise/symptom exacerbation – that are consistent with a post viral fatigue syndrome (PVFS) or even ME/CFS.
Most people with Long Covid also have a layer of on-going clusters of symptoms (eg shortness of breath, chest pains, heart rhythm disturbances/cardiac arrhythmias, palpitations on exertion, fevers, loss of taste and smell, abdominal pain and diarrhoea, skin rashes like ‘Covid toe’) relating to the involvement of their lungs, heart and blood vessels, liver, kidneys, brain, skin etc that occurred at the time of the original infection.
In some cases there is a third layer of symptoms involving mental heath – anxiety, depression, even PTSD.
While the underlying cause of both Long Covid and ME/CFS remains uncertain, one very interesting overlap between the two conditions is the involvement of immune system chemicals called cytokines – which cause inflammation and many of the symptoms associated with any acute infection.
During the acute stage of Covid-19 there is what is termed a cytokine surge – with a massive over production of cytokines causing inflammation in the lungs and sometimes serious respiratory complications. There is research evidence in ME/CFS to indicate that an on-going cytokine response involving what are called pro-inflammatory cytokines fails to ‘switch off; after the initial infection. These cytokines can then pass through what is called the blood brain barrier and affect an area of the brain called the hypothalamus (which acts as a thermostat for temperature regulation, appetite, sleep and hormone regulation) and control centres in the brain for the autonomic nervous system (which controls heart rate and blood pressure and leads to orthostatic intolerance and PoTS).
At present there is no treatment for Long Covid – just like ME/CFS. so management consists of carefully assessing people to see if there is any on-going damage to the lungs, heart, liver etc and then providing good information and guidance on the management of individual symptoms relating to this damage. In particular this means carefully assessing lung and heart function to try and establish whether any long term damage to the lungs and heart muscle are causing symptoms such as shortness of breath and palpitation.
One interesting therapeutic development is the finding that some people with Long Covid-19 have symptoms of what is called mast cell activation – where a viral infection destabilizes mast cells causing the release of histamine.. Where this occurs there are reports that treatment with drugs called histamine antagonists and a low histamine diet can be helpful here.
There is now a network of over 70 hospital based Long Covid Clinics where people can be referred. Feedback to the MEA indicates that they are often very good assessing people but not so good at having the necessary time to spend on management, and lacking the necessary expertise to deal with ME/CFS type symptoms. There have been proposals to have joint Long Covid and ME/CFS clinics. The MEA position is that they should be kept separate at present – due to the need to have specialist input for the heart and lung problems but to establish links to ME/CFS clinics are refer people over where appropriate.
The overall outlook in Long Covid appears to be very uncertain – as with ME/CFS. Many people with Long Covid fluctuate in severity – often more dramatically than occurs in ME/CFS. Some stabilize and a few have deteriorated. While some are clearly making a progressive improvement or even full recovery from Long Covid, they appear to be in a minority.
Here at the MEA we are trying to build bridges with the Long Covid patient and medical communities by offering to provide information and guidance on symptoms that overlap with ME/CFS. We are also explaining how research into ME/CFS, especially relating to immune system dysfunction and problems with creating energy at a cellular level, can help them to understand what may be happening in Long Covid. But this should be a two way process with research into cause and treatment of Long Covid helping people with ME/CFS.
Further information
We are regularly updating the MEA information booklet covering the overlap between Covid-19 and ME/CFS plus the diagnosis and management of Long/Post Covid fatigue and Long/Post Covid ME/CFS. This booklet covers the management of all the common ME/CFS like symptoms that overlap with Long Covid in some detail. This is a free download from the Covid-19 section on the MEA site.
MEA position statement on the overlaps between Long Covid and ME/CFS
An article for the BMA/BMJ publications with contributions from Drs Nina Muirhead, David Strain, Amy Small and myself also covers the ME/CFS and Long Covid overlap