IMAGE DESCRIPTION: Images of Baroness Thornton, Baroness Scott of Needham Market and an image of UK parliament. Title: Parliamentary Debate on Long Covid. The ME Association logo (bottom right)

Parliamentary Debate: The short and long-term challenges presented by Long Covid

Baroness Thornton (Labour), Non-executive Director, Whittington Health Hospital Trust, put forward the debate (17th Nov 2022) – that the House takes note of the short and long-term challenges presented by Long Covid.

Please read the full transcript and the Parliament website's overview of the discussion and the issues raised below:

Baroness Thornton addresses the need for research into Long Covid and other post-infection syndromes:

Although researchers have been surveying the broad spectrum of symptoms associated with long Covid, it has to be said they have not found one biological explanation. It is likely there are various mechanisms involved. Similarities between long Covid and other post-infection syndromes need to be considered, and I am confident this will be raised during the debate today

Baroness Thornton

Baroness Thornton continues:

Clearly, there needs to be more support for health professionals to identify and treat long Covid. All health professionals should be supported and equipped with up-to-date information to ensure that they understand the variable symptoms of long Covid and are aware of the available support and how to refer people to it. In terms of the funding and resources to establish multidisciplinary services, pathways for long Covid should focus on addressing patients’ multisystem symptoms and rehabilitation needs and provide individualised care plans accordingly. There also needs to be a more consistent provision of long Covid clinics, including for children, so that there is less variation in waiting times for treatment. Increased funding and independent workforce planning are key to the success of these services. How many more multidisciplinary centres are planned, and by when?

Baroness Thornton concludes:

At the end of this debate, I would welcome an acknowledgement by the Minister that the Government recognise that long Covid is having a major impact on productivity, employment and wider society, as well as our health services. I would like the Minister to tell me that they have a plan for this to be tackled in a comprehensive fashion across government. I beg to move.

Baroness Scott of Needham Market (Liberal Democrat) – Vice Chair of the APPG on ME:

Baroness Scott of Needham Market – Vice Chair of the APPG on ME

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. The ME Association has requested that clinical trials for long Covid treatments include a group with ME. What has been learned about the management of ME can help many people with long Covid.

Harlan Krumholz, a cardiologist at Yale, said:

“No one wanted the pandemic, but sometimes a jolt to the system can create innovation in ways that wouldn’t have occurred otherwise”.

That should be our guiding principle.

Read The Parliamentary Under-Secretary of State, Department of Health and Social Care Lord Markham's reply within the Hansard transcript

You can also watch the lengthy Long Covid debate on our Youtube channel. Baroness Scott of Needham Market – Vice Chair of the APPG on ME- discusses the overlap of Long Covid and ME/CFS at 00.19.42.

Shopping Basket