House of Lords Debate on Long-COVID – 17th November 2022

Initiated by Baroness Thornton the House of Lords on 17th November 2022 debated a ‘motion to take note’ “That this House takes note of the short and long term challenges presented by Long Covid.”

The debate also included references to ME/CFS which are worthwhile to note

My Lords, I thank the noble Baroness, Lady Thornton, for bringing this important subject to the House. I have a very close relative who has had ME for a number of years, and I have seen at first hand how debilitating and life changing it can be. I have become the vice-chair of the APPG for ME and I have talked to hundreds of ME patients who have had their condition ignored or ridiculed. They have been subject to inappropriate and sometimes dangerous medical intervention, and they are struggling with an employment and benefits system that simply does not acknowledge the realities of their condition. Those 250,000 ME patients are now, in effect, being joined by over 2 million long Covid sufferers.
It is worth starting by pointing out that debilitating post-infection syndromes such as long Covid are not new clinical entities. In American medical literature, ME-like symptoms are described as far back as 1934. When ME was first noticed in this country it was described as “yuppie flu”, but in fact these syndromes affect millions of people suffering from a range of viruses, including those living in poor, third-world countries.

The Institute for Fiscal Studies estimates that one in 10 people with long Covid have given up work, with “persistent labour market effects”. This month’s Lancet said that
“post-acute infection syndromes could pose a substantial public health burden in the near future if appropriate measures are not … taken”.

Despite the huge economic cost they inflict, as the noble Lord, Lord Bethell, said, post-viral illnesses have been neglected, dismissed and under-researched for far too long. We still have no diagnostic blood tests for either long Covid or ME.

As well as the breathlessness, chest pains and loss of taste or smell which characterise long Covid, patients exhibit a cluster of symptoms such as the debilitating fatigue, post-exertional malaise, cognitive dysfunction, PoTS and sleep disturbances that are also diagnostic of ME and other post-infection syndromes. While all the funding for research into long Covid must be welcomed, it is disappointing that some researchers are still ignoring or are not aware of what has already been learned about what may be causing ME and how this could help us to understand the causes of long Covid.

Almost 40 clinical trials into possible treatments for long Covid have been registered, some involving interventions that have already been assessed in ME. Some of these treatment trials have small sample sizes or no control groups. The lessons do not appear to have been learned from the use of poor-quality methodology in many clinical trials involving ME. Some health professionals who are managing people with long Covid are unaware of or ignoring what we have learned about the management of ME and other post-infection syndromes, on activity and energy management particularly. The ME charity sector produces excellent information on symptom and energy management, as does the new NICE guideline, but people with long Covid are often simply unaware of this information, as are many health workers.

Another important lesson that needs to be learned from ME is that misdiagnosis can occur when people with chronic fatigue are not properly assessed and are labelled as having a post-viral syndrome. There are some very disturbing cases being reported of people having long Covid when, in fact, they have another medical condition. A Suffolk councillor recently featured in the news when, it turned out, her long-standing diagnosis of long Covid actually proved to be lung cancer.
Research into the cause and diagnosis of, and effective treatments for, long Covid could help those with ME.

Baroness, Lady Scott of Needham Market

The noble Baroness, Lady Scott of Needham Market, has drawn attention to the way that ME played out through chapters of misapprehension and wicked neglect through its course, until we got on to more certain ground. I might add dyslexia as another condition that suffered from not having adequate analysis or forensic understanding, which led to its own misapprehensions.

Lord Griffiths of Burry Port

In response to the debate, Lord Markham (The Parliamentary Under-Secretary of State Department of Health and Social Security) acknowledged that the most recent £50m pledged to long-COVID research was protected and was in addition to the £108m already spent but also that

I say in response to the noble Baronesses, Lady Scott and Lady Meacher, who spoke about trying to understand how long Covid might interact with, or have similarities to, ME and chronic fatigue, that funding is still available.

The Motion was passed by the House.

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