Posted on 03/25/2021 by wames

WAMES statement on post-viral illnesses: COVID-19 and ME/CFS

 

WAMES is calling on all political parties in Wales to support an inclusive approach to responding to COVID-19 and ME/CFS.

Wales needs a strategy to recognise and treat illnesses triggered by ALL viruses.

 

What we know about post-COVID illness:

  • Almost 70%  of people affected by COVID experience damage to organs and lingering symptoms. https://www.bmj.com/content/371/bmj.m4470
    10-20% are thought to experience a collection of symptoms which is being called Long COVID, including fatigability, breathlessness, brain fog, pain, sleep disturbance, palpitations. In Wales there are an estimated 15,000 patients with Long COVID.
  • Long COVID is being recognised as a health crisis and the NHS is beginning to consider how they can support patients, some offering psychological and exercise therapies.
  • People who have been hospitalised by COVID-19 are offered referrals, management advice and treatment. People with minor symptoms (or who are asymptomatic) can also develop long lasting symptoms but are not always believed by their GP and can be refused support or referrals.
  • Some Health Boards are developing exercise therapy or virtual self-management classes. The COVID Recovery app has been launched in Wales “to reassure those people that there is support available to them and that they are not alone.” Not everyone has been able to access the app.
  • Based on data from other viruses, including a previous SARS virus, a percentage of survivors will go on to develop the long term condition ME/CFS, possibly as high as 27% https://www.meresearch.org.uk/covid-19-and-me-cfs-cases/

What we know about ME/CFS:

  • A large percentage of people with ME/CFS are aware that they developed the condition following a virus. Doctors suspect that many more also experienced a virus but haven’t made the connection between that and developing ME/CFS.
  • ME/CFS is classified by the World Health Organisation as ‘a condition of the nervous system’ at G93.3 along with other recognised neurological conditions.
  • Research is uncovering widespread dysfunction in many of the body’s systems with the body unable to produce energy to maintain those systems efficiently. The key characteristic for patients is Post-Exertional Symptom Exacerbation (PESE) also known as Post-exertional Malaise (PEM), which is also experienced by many people with long COVID.
  • There are an estimated 13,000 people of all ages with ME/CFS in Wales, approximately 25% of whom are severely affected. If up to 27% with long COVID were to go on to develop long term ME/CFS, the number of people with ME/CFS could rise to over 17,000 in a year or two.
  • Many doctors still do not recognise ME/CFS as a serious long-term, life altering condition and do not refer disabled patients to support services.
  • Health Boards in Wales have been resistant in recognising and offering services for ME/CFS. Three offer psychological and exercise therapies for small numbers of patients with fatigue, alongside pain patients. ME researchers have been warning about the dangers of exercise therapy for decades so many people with ME/CFS have chosen not to access those services.
  • Infections, alongside activity, can lead to relapse and severe illness in ME/CFS, but the condition has not been specifically recognised and included with other neurological conditions, amongst those needing to shield from COVID-19, or be prioritised for vaccination.

What does the WHO and NICE say about long COVID & ME/CFS?

  • The WHO calls on countries to recognise the ‘impact on the individual, on society, and on the economy’ of Post-COVID syndrome, to prioritise rehabilitation and systematically gather information – to practice the “three Rs”—recognition, research, and rehabilitation.
  • The WHO has made no statement about ME/CFS, which affects an estimated 20 million people worldwide.
  • NICE issued a cautionary notice in 2020 for Long COVID which questioned the appropriateness of exercise therapy.
  • NICE issued rapid guidelines for COVID-19 in Dec 2020 which acknowledged the need for supported self-management based on multi-disciplinary clinics and goal-setting, but without specific guidance on the nature of management options.
  • NICE reversed its 2014 ME/CFS guidelines in the 2020 draft, no longer recommending exercise therapy and highlighting the need to manage Post-Exertional Symptom Exacerbation (aka PEM). The final version, which is expected to continue to recommend multi-disciplinary services for ME/CFS, is due out 21 April 2021.

WAMES believes it is right that people suffering from post-COVID symptoms should receive appropriate support from health and social care. It is not right that the NHS and social services should continue to minimise and ignore the debility triggered by other viruses. Now is the time to put right past omissions and put in place appropriate services for ALL survivors of viruses.

In 2020 WAMES called on the Welsh Government to lead the way in caring for ALL survivors of viruses, without discrimination. The response from the Health Minister did not address the issue. WAMES is able to supply more information about any of the issues mentioned above.

Jan Russell, Chair    jan@wames.org.uk

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