UK: All Party Parliamentary Group on Coronavirus, March 2022 onwards

Andy

Andy

Senior Member (Voting rights)
Press release:

"MPs call on UK government to spend £100 million a year to research treatments for Long Covid

Report finds UK government has ‘not adequately funded’ Long Covid research and treatments

MPs and Peers say UK Government inaction means Long Covid will continue to impact UK productivity and essential services


For Immediate Release

The UK Government is today facing calls to ensure that the £50 million pledged for Long Covid research funding is doubled and matched each year to support the development of new treatments for Long Covid.


In a new report published by the All-Party Parliamentary Group (APPG) on Coronavirus today, cross-party MPs and Peers have recommended the UK Government double the £50 million pledged in the ‘Living with Covid’ plan each year to fund urgent new research into diagnostics and treatment, as well as providing financial support for key workers living with Long Covid.


The new report found that the UK Government’s Covid-19 policymaking has ‘continuously failed’ to take Long Covid into account, as well as failing to provide guidance, funding or support to employers and protecting children in schools. The report further found that the UK Government has not 'adequately funded’ research to identify treatments for Long Covid.


According to the latest ONS figures, an estimated 1.5 million people (2.4% of the population) are currently living with the condition in the UK, with the high number of resulting staff absences having a serious impact on the UK workforce, economy and vital public services.


Recent research conducted by the APPG estimated that 1.82 million days were lost to healthcare workers with Long Covid from March 2020 to September 2021 across 219 NHS trusts in England. Similarly, a survey conducted last month by the Chartered Institute of Personnel and Development found that a quarter of UK employers cited Long-Covid as one of the main causes of long-term sickness absence among their staff.


On Thursday, MPs will debate the government’s treatment of Long Covid and its impact on the UK workforce, which comes on the two year anniversary of the country’s first national lockdown.


Layla Moran MP, Chair of the All-Party Parliamentary Group on Coronavirus, said:

“Living with Covid inevitably means living with Long Covid too, so it is crucial that the Government rise to this moment and commit substantial annual funding for research until we have developed effective treatments for this often debilitating condition.

“Long Covid is already affecting 1.5 million people in the UK, and if the government fails to fully grasp the enormity of this challenge now, we could be hurtling towards a long-term health and workforce crisis in the future.”


Dr Dan Poulter MP, Vice-Chair of the All-Party Parliamentary Group on Coronavirus, said:

“Prematurely scrapping free testing will likely lead to rising infections, and as more people become unknowingly infected with the virus, more people will unfortunately develop Long Covid too.

“While we are currently facing other international challenges, this pandemic is sadly not over. That’s why establishing an annual fund for researching and developing treatments for Long Covid is both the economically smart and right thing to do, as in the long run, it will help us to avoid severe impacts on people’s health and the UK economy.”


David Nabarro, Special Envoy on Covid-19 for the World Health Organisation, said:

“What does it mean to live with COVID? The virus is among us. It is constantly evolving. It causes serious illness and may kill people who are susceptible. It may also lead to long COVID with the extra risks it brings.

“The present pattern is that case numbers start to climb every three months or so: this implies a need to detect surges quickly, prevent transmission, protect those most at risk and prepare for explosive outbreaks. It is a time to listen to the health workers: they know what is happening and where it may lead. They want the best for everyone.”

Report available from https://www.appgcoronavirus.uk/report-on-long-covid-2022
 
Long Covid: Impact on the Workforce
– in the House of Commons at 1:21 pm on 31st March 2022.

debate
Layla Moran Liberal Democrat Spokesperson (International Development), Liberal Democrat Spokesperson (Foreign and Commonwealth Affairs) 1:21 pm, 31st March 2022
I beg to move,

That this House
has considered the impact of long covid on the UK workforce.

I thank the Backbench Business Committee for allowing us to hold this updated debate on long covid. I also thank my co-sponsors, some of whom, I am sad to say, are at home ill with covid and very much wanted to be here today. Also the fact that the debate has moved weeks has not helped. For those watching at home, I have been contacted by several Members who are very sorry that they are not able to be here. I also want to put on record my thanks to the many hundreds of people who, over the years, have contacted the all-party group on coronavirus with their personal stories, many of which are very heart warming, but also moving and worrying because it is a debilitating condition. What I say to all of them is: “We hear you, you have not been forgotten and we will continue to fight for you.”

I want to recognise the actions that the Government have taken so far. I was pleased that, after the first debate we had on the issue in January 2021, the Government made some £18.5 million available for research into long covid, including treatment, and delivered even more funding in the summer, which is incredibly welcome. In that debate, I also welcomed the new dedicated long covid clinics and the publishing of guidance to medical professionals by the National Institute for Health and Care Excellence, the Scottish Intercollegiate Guidelines Network and the Royal College of General Practitioners. However, despite that welcome action, it has felt, over the past eight months, that long covid has totally dropped off the radar and, on this issue, there has been very little debate.

I thank the Under-Secretary of State for Business, Energy and Industrial Strategy, Paul Scully for coming to the Chamber to answer this debate. I believe that it is the first time that the Department for Business Energy and Industrial Strategy has answered in the Chamber on this. I will focus my remarks on the effect that long covid has had on the workforce because our belief is that this is a looming crisis that we need to think ahead about and that it would be wrong for us just to focus on the medical side— there are broader implications here.

Although there are many understandable reasons why this matter may have dropped off the radar, including the cost of living crisis and the war in Ukraine, I argue that these things are very much linked. How are we going to have a strong and productive economy if large swathes of our workforce are struggling to do the jobs that they are meant to be doing? How can we help them to recover?

Over this past year, we have had more information and learned more about long covid, although it is worth saying that there is still no cure.
Click to expand...

full debate
https://www.theyworkforyou.com/debates/?id=2022-03-31a.1038.1&s=Chronic+Fatigue+Syndrome#g1042.1
 
That horse has stormed out of the barn a loooooong time ago.

It's weird that people speak of things that have been happening for years as if they could be avoided in the future.

Jaime Seltzer put it marvelously today, something like you can't predict the future if you're still negotiating with the present. Hell, this is negotiating with the past, trying to avoid it happening. Sadly, those negotiations can somehow go on and on endlessly.
 
July long covid appg Minutes

Loading…

www.longcovid.org

MOH outlined that Long Covid services are different to cancer services. CB advised that in theory, Long Covid services could all be involved in research recruitment but we are at the stage of still trying to get funding for Long Covid treatment trials – “there needs to be funding for trials to get people in to” - and that Long Covid needs to be made one of the priority conditions by funding bodies such as the NIHR (National Institute for Health and Care Research) and MRC (Medical Research Council). CB stated that it is important for Long Covid to be named specifically in funding calls for research that can apply to a large range of conditions.

BF posed that there were similarities between Long Covid and ME. CB advised that there are some similarities but also differences, for example in some inflammatory responses. It was also explained by the Secretariat that although some people with Long Covid meet the same diagnostic criteria as those with ME, there is also a large number of people with Long Covid who do not have ME.

……
Regarding mechanisms of Long Covid, CB stated that there is more than one thing happening.
CB further stated that researchers have identified blood biomarkers that are potentially Long Covid specific and the opportunity is needed to take this further so it can be put into medical practice, which will help identify which therapeutics would be appropriate for which patients.
He is confident that a rule-in biomarker for Long Covid is within reach. However, CB outlined that a Long Covid clinical network is needed and concern was raised that Long Covid services in the UK range from very good to completely absent.
CB said that we are at a threshold and if momentum is kept it will tip us towards Long Covid tests and treatments.



CB is pleased with the very recent NIHR EME (Efficacy and Mechanism Evaluation) funding call for Post Acute Infection Syndromes including Long Covid and myalgic encephalomyalitis/chronic fatigue syndrome (https://www.nihr.ac.uk/funding/post-acute-
infection-syndromes-including-long-covid-and-myalgic-encephalomyelitischronic-fatigue-
syndrome/2025354). This appears to have been the result of a research roundtable meeting in October 2024 between researchers and two experts by experience, former Under-Secretary of State for Public Health and Prevention Andrew Gwynne MP, and DHSC Chief Scientific Adviser and CEO of NIHR Lucy Chapell. JP was surprised it had taken nine
months for the funding call to come out but was also pleased there is some progress. CB agreed but stated that it is not enough, with other funding calls for diagnostics not being Long Covid specific meaning researchers are up against many other diseases with lots of people bidding for the funds, and Long Covid research has a small workforce which is under threat.

…
Actionable solutions proposed by CB include funding calls that include Long Covid as one of the named conditions of interest making an equitable funding landscape, and NIHR Biomedical Research Centres (BRCs) having Long Covid specific themes. If the NIHR could request a Long Covid theme in BRCs that could amount to around £5m of funding.

JP asked about the lack of research funding from the NIHR - is it because the science isn't yet good enough as for ME? МОН responded stating that it is different for Long Covid as we know what has caused it, there has been a huge amount of research and Long Covid specific biomarkers are being found. Long Covid is, therefore, in a better position than ME where a historic and ongoing paucity of research means that the science is not as well developed.


Some of the actions decided were:

…..
Draft letter for members of the public to write to their local ICBs.
Secretariat
Draft/send letter to DHSC re. specifically mentioning Long Covid in research funding calls and to ask for a Long Covid theme in the next round of funding for BRCs.
Secretariat/JP
Draft/send letter regarding Covid vaccine eligibility.
Secretariat/JP
Follow up with Sir Stephen Timms re. meeting about Timms Review.
JP
Follow up with Ashley Dalton re. invite to APPG on Long Covid meeting and Covid/Long Covid prevention matters.
 
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Poi
Cinders66 said:
July long covid appg Minutes

Loading…

www.longcovid.org

MOH outlined that Long Covid services are different to cancer services. CB advised that in theory, Long Covid services could all be involved in research recruitment but we are at the stage of still trying to get funding for Long Covid treatment trials – “there needs to be funding for trials to get people in to” - and that Long Covid needs to be made one of the priority conditions by funding bodies such as the NIHR (National Institute for Health and Care Research) and MRC (Medical Research Council). CB stated that it is important for Long Covid to be named specifically in funding calls for research that can apply to a large range of conditions.

BF posed that there were similarities between Long Covid and ME. CB advised that there are some similarities but also differences, for example in some inflammatory responses. It was also explained by the Secretariat that although some people with Long Covid meet the same diagnostic criteria as those with ME, there is also a large number of people with Long Covid who do not have ME.

……
Regarding mechanisms of Long Covid, CB stated that there is more than one thing happening.
CB further stated that researchers have identified blood biomarkers that are potentially Long Covid specific and the opportunity is needed to take this further so it can be put into medical practice, which will help identify which therapeutics would be appropriate for which patients.
He is confident that a rule-in biomarker for Long Covid is within reach. However, CB outlined that a Long Covid clinical network is needed and concern was raised that Long Covid services in the UK range from very good to completely absent.
CB said that we are at a threshold and if momentum is kept it will tip us towards Long Covid tests and treatments.



CB is pleased with the very recent NIHR EME (Efficacy and Mechanism Evaluation) funding call for Post Acute Infection Syndromes including Long Covid and myalgic encephalomyalitis/chronic fatigue syndrome (https://www.nihr.ac.uk/funding/post-acute-
infection-syndromes-including-long-covid-and-myalgic-encephalomyelitischronic-fatigue-
syndrome/2025354). This appears to have been the result of a research roundtable meeting in October 2024 between researchers and two experts by experience, former Under-Secretary of State for Public Health and Prevention Andrew Gwynne MP, and DHSC Chief Scientific Adviser and CEO of NIHR Lucy Chapell. JP was surprised it had taken nine months for the funding call to come out but was also pleased there is some progress. CB agreed but stated that it is not enough, with other funding calls for diagnostics not being Long Covid specific meaning researchers are up against many other diseases with lots of people bidding for the funds, and Long Covid research has a small workforce which is under threat.

…
Actionable solutions proposed by CB include funding calls that include Long Covid as one of the named conditions of interest making an equitable funding landscape, and NIHR Biomedical Research Centres (BRCs) having Long Covid specific themes. If the NIHR could request a Long Covid theme in BRCs that could amount to around £5m of funding.

JP asked about the lack of research funding from the NIHR - is it because the science isn't yet good enough as for ME? МОН responded stating that it is different for Long Covid as we know what has caused it, there has been a huge amount of research and Long Covid specific biomarkers are being found. Long Covid is, therefore, in a better position than ME where a historic and ongoing paucity of research means that the science is not as well developed.


Some of the actions decided were:

…..
Draft letter for members of the public to write to their local ICBs.
Secretariat
Draft/send letter to DHSC re. specifically mentioning Long Covid in research funding calls and to ask for a Long Covid theme in the next round of funding for BRCs.
Secretariat/JP
Draft/send letter regarding Covid vaccine eligibility.
Secretariat/JP
Follow up with Sir Stephen Timms re. meeting about Timms Review.
JP
Follow up with Ashley Dalton re. invite to APPG on Long Covid meeting and Covid/Long Covid prevention matters.
Click to expand...


Points in my view :
1) long covid APPG do not see collaboration with ME/CFS as key
2) Drs still hold double standards with ME/CFS at the bottom of a heap they're happy it stays at
3) Jo platt seem to have accepted NIHR/ MRC narrative that m.e is not in a place to receive funding which renders the APPG for m.e a dead duck in terms of fight back against the DHSC lack of delivery plan
4) the issues with capacity aren't seen as enough to hold long covid back
5) NIHR types can identify straight away the strategies long covid needs , Ie a clinical network and inclusion in funding calls to help long covid compete, Whilst addressing m.e issues has been presented as an insurmountable problem
6) the claim that the DHSC delivery plan had to be delayed to make it as ambitious as possible seems to be falsehood. Firstly there's nothing ambitious in it, but in terms of research funding, the repurposing drugs stuff had been arranged in October 2024, the prime stuff was arranged independently of the DHSC delivery plan and the other services stuff is imo of minimal value
 
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I'm afraid my cynical view of most MP's who join APPG's is that they do so to get votes at the next election by appearing to be useful on behalf of constituents. APPGs have zero power and usually zero influence.
 
Cinders66 said:
Poi


Points in my view :
1) long covid APPG do not see collaboration with ME/CFS as key
2) Drs still hold double standards with ME/CFS at the bottom of a heap they're happy it stays at
3) Jo platt seem to have accepted NIHR/ MRC narrative that m.e is not in a place to receive funding which renders the APPG for m.e a dead duck in terms of fight back against the DHSC lack of delivery plan
4) the issues with capacity aren't seen as enough to hold long covid back
5) NIHR types can identify straight away the strategies long covid needs , Ie a clinical network and inclusion in funding calls to help long covid compete, Whilst addressing m.e issues has been presented as an insurmountable problem
6) the claim that the DHSC delivery plan had to be delayed to make it as ambitious as possible seems to be falsehood. Firstly there's nothing ambitious in it, but in terms of research funding, the repurposing drugs stuff had been arranged in October 2024, the prime stuff was arranged independently of the DHSC delivery plan and the other services stuff is imo of minimal value
Click to expand...
I appreciate it may seem like that given how weak the plan is, but Number 6 is not a correct assumption. There was an extremely strong, unanimous late stage stakeholder pushback on the original proposed FDP particularly around the absence of substantial health and research actions which forced the addition of a few more significant actions. It was not the only cause of delays as there was government change and an internal restructure too, but was a significant one under AD.

My impression was that the NIHR wanted to help but there is nothing to translate. The MRC is where research is needed and is blocking as an organisation. Only time will tell if DecodeME will change that.

Perhaps on number three it is worth a letter to JP making the case otherwise?
 
I feel that using the political system to advocate for ME is a crucial step which we fail to pursue sufficiently.
My brain however doesn't exist at the moment. All my current pem has made my brain feel like treacle. Sticky, nothing flows.

One achievement over the last few years has been to get the whole Libdem party onside in signing the letter, and Ed Davey is sympathetic and knowledgeable in how to work the system. I think we need to capitalise on that but unfortunately I don't think we have a member in his constituency any longer.
#ThereforME have also shown interest in using the political process.

Head is spinning. zMay not be back for a while.
 
Binkie4 said:
I feel that using the political system to advocate for ME is a crucial step which we fail to pursue sufficiently.
My brain however doesn't exist at the moment. All my current pem has made my brain feel like treacle. Sticky, nothing flows.

One achievement over the last few years has been to get the whole Libdem party onside in signing the letter, and Ed Davey is sympathetic and knowledgeable in how to work the system. I think we need to capitalise on that but unfortunately I don't think we have a member in his constituency any longer.
#ThereforME have also shown interest in using the political process.

Head is spinning. zMay not be back for a while.
Click to expand...
Sorry you're feeling rubbish, Binkie4.

When you say we don't have a member in ED's constituency any more, do we know that for sure? Might be worth starting a thread specifically asking that question, if you're looking for volunteers to contact him.
 
Sasha said:
Does anybody know why the MRC is blocking?
Click to expand...
I came down to thinking it's multi-factorial
1. There's less money sloshing round for research to begin with and its a competitive not a strategic national need driven process.

2. Lack of ME researchers to begin with, and lack of structures that make ME applications easier/cheaper/more credible vs well established fields

3. The way the MRC works by using previously funded people for peer review makes it an old boys club that keeps on funding the same things and people

4. ME research is seen as "risky" ie as likely to have poor success and ROI

5. From negative review comments some researchers have published, prejudice, ignorance and BPS viewpoints about the nature of the illness plays a further hampering role. This reinforces #4.

6. Lack of top down political will / pressure - their minister (science, Peter Kyle I think ), or someone in government who is more powerful, is not telling them to make an exception. This is how other disease specific programmes got funded.

The MRC is of course in vehement denial and has shown itself as incapable of admitting it's own structural failings.

Really it needs reform, or for some kind of a separate incubator unit for neglected and emerging diseases established that is run on different principles.
 
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