Long Covid debated in the House of Lords with briefing from the ME Association

The House of Lords held a debate on Long Covid on Thursday 17th November. Baroness Scott of Needham Market, who had been briefed by the ME Association, spoke on the overlaps between Long Covid and ME/CFS. Her speech can be heard after the contribution from Lord Bethell at 12.51 on the recording below. There were several other references to the similarities that these conditions shared.

ME Association briefing notes for Long Covid debate

“What has been learnt about the management of M.E. can help many people with Long Covid. Research into and management of both conditions should be a two-way process. This is not happening at present and needs to urgently change.”

Dr Charles Shepherd

1. Debilitating post-infection syndromes like Long Covid are not new clinical entities. They can follow bacterial, viral and parasitic infections and include myalgic encephalomyelitis (M.E.) – which affects around 250,000 people here in the UK.
   Post-infection syndromes affect millions of people throughout the world and include those living in poorer countries – e.g., post-Chikungunya, Dengue, Ebola, Polio and Zika-virus syndromes. Despite the huge economic cost, they inflict they have been neglected, dismissed and under-researched for far too long.
2. People with Long Covid often have symptoms such as breathlessness, chest pains, loss of taste or smell that are related to organ damage (lungs, heart, nervous system etc.) which occurred at the time of the initial infection.
   They also often have a cluster of other symptoms – debilitating fatigue and post-exertional malaise, cognitive dysfunction/brain fog, orthostatic intolerance and PoTS (postural orthostatic tachycardia syndrome), sleep disturbances etc. – that are diagnostic of M.E. and other post-infection syndromes. 
3. There are therefore some important causative/pathophysiological and clinical/symptom overlaps between Long Covid and M.E. and other post-infectious syndromes.
4. While all the funding for research into Long Covid must be welcomed, it is disappointing that some researchers are still either ignoring or are not aware of what has already been learnt about what may be causing M.E. and how this could help us to understand the cause of Long Covid and the perpetuation of symptoms.
5. Nearly 40 clinical trials for possible treatments of Long Covid have been registered – some involving interventions that have already been assessed in M.E.  And some of these Long Covid treatment trials have small sample size or no control groups. Lessons do not appear to have been learnt from the use of poor-quality methodology in many clinical trials involving M.E.
6. Some health professionals who are managing people with Long Covid are unaware of or ignoring what we have learnt about the management of ME and post-infection syndrome symptoms, activity and energy management in particular.
   M.E. charities provide excellent information on symptom and energy management – as does the 2021 NICE Clinical Guideline on ME/CFS – but people with Long Covid are often not aware of this information.
7. One other important lesson that needs to be learnt from M.E. is that misdiagnosis occurs when people with chronic fatigue are not properly assessed.
   There are now some very disturbing cases being reported of people who are not recovering from Covid being diagnosed as Long Covid when they do in fact have another medical condition causing their continuing ill health. Refer to: BBC News Suffolk woman's long Covid diagnosis was lung cancer | 01 October 2022
8. Clinicians and researchers involved with Long Covid, and M.E. therefore need to be collaborating to help both patient communities. Research into causation and effective treatments for Long Covid could well help those with M.E. What has been learnt about the management of M.E. can help many people with Long Covid. Research into and management of both conditions should be a two-way process. This is not happening at present and needs to urgently change.

Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association.
Member of the 2018-2021 NICE Guideline Committee.
Member of the 2002 Independent Working Group on ME/CFS.