Petition: UK Funding for ME & Long Covid research into treatment

Peter T

Peter T

Senior Member (Voting Rights)
The MEA shared this UK Parliamentary petition on their Facebook page recently, it may have been shared elsewhere, so sorry if this is a duplicate

Urgent funding for research into Long Covid and ME/CFS treatments and cures

“Around a quarter of a million people are suffering with ME/CFS in the UK and over 2 million with long Covid. Many of these people are severely disabled. There are no cures of specific medicines for these conditions. Urgent funding is needed for research to find effective treatments and cures.”
https://petition.parliament.uk/petitions/630551

Can only be signed by UK citizens and/or UK residents.
 
This petition poses a question which is very easy to bat back. There is already funding for, and research into, these conditions.

A more pertinent ask would be for a change in the level of funding, perhaps to the level of diseases with similar impact. Or it could helpfully call for moratoria on publicly funded BPS research.

If this petition had lots of critical mass already it might be worth signing and socialising, but it only has 3k signatures so far.

I don’t understand the MEA at all.
 
The MEA shared the petition without any additional information. It was created by a Nadine Wilkus. A web search brought up a charity fund raiser with this name, but I don’t know if it is the same person.

The full text of the petition is:

Around a quarter of a million people are suffering with ME/CFS in the UK and over 2 million with long Covid. Many of these people are severely disabled. There are no cures of specific medicines for these conditions. Urgent funding is needed for research to find effective treatments and cures.

It is quite frankly a disgrace that so little funding has gone into ME/CFS in the past few decades. The new pandemic is long Covid and we believe sufferers are not receiving enough help due to lack of research into treatments and cures. We need urgent funding for research into the pathology of these conditions. This should include research into mitochondria and the autonomic nervous system of patients with these conditions.

Millions of people are missing out on their lives. The Government must act now.
Click to expand...

It might have been helpful to cite the information of historic underfunding of ME research compared to other conditions and also to give clear reasons why the government should intervene specifically in relation to these conditions, given the recent Parliamentary questions on this matter tend to be fobbed of with the standard response that it is not for the government to decide research funding and that there are existing medical research funding bodies better able to make these decisions.

Also there should have been some explaining why ME and Long Covid are related in terms of research needs, namely that in the region of 50% of people with Long Covid meet the diagnostic criteria for ME/CFS.

Parliamentary petitions work best as part of an ongoing media and publicity campaign, but I have no idea if there is anything in the pipeline.
 
I wrote a tweet to share, if you are on twitter and want something fast and easy to RT?



In our area, a small group of us have engaged our MP since 2018 and one of our first asks was for ringfenced funding into biomedical research (not our preferred wording)

https://questions-statements.parliament.uk/written-questions/detail/2018-05-14/143805

He continues to fight our corner, is very aware that ring fenced funding has been announced since 2018 for Brain Tumours and MND, and he maintains contact with various researchers in the UK.
 
The UK Government has responded to this petition:

The Government has responded to the petition you signed – “Urgent funding for research into Long Covid and ME/CFS treatments and cures”.

Government responded:

The Government is committed to funding high-quality research to improve treatment of Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Long Covid.

Covid-19 is a new disease and therefore it is not yet clear what the physical, psychological and rehabilitation needs will be for those experiencing long-term effects of the virus, referred to as “post-Covid-19 syndrome” or “Long Covid”. Myalgic Encephalomyeltis (ME) is complex, medical condition affecting multiple body systems and its pathophysiology is still being investigated.

The funding of robust research and scientific evidence is recognised as playing a pivotal role in shaping how we improve our understanding and treatment of both conditions.

Since 2020, the Government has invested over £50 million through the National Institute for Health Research (NIHR) and UK Research Institute (UKRI) in Long Covid research projects to improve our understanding of the diagnosis and underlying mechanisms of disease, the effectiveness of pharmacological and non-pharmacological therapies and interventions as well as evaluating clinical care.

In 2020 NIHR and the UKRI Medical Research Council (MRC) came together to fund the world’s largest genome-wide association study (GWAS) of ME/CFS called ‘DecodeME’ (https://www.decodeme.org.uk/). This £3.2m study will analyse saliva samples from 25,000 people with ME/CFS (including people with Long Covid) and to search for genetic differences that may indicate underlying causes or increase the risk of developing the condition.

Government research funding is also provided by UK Research and Innovation and the Medical Research Council (MRC). Research into Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is an area of strategic importance for the MRC and the only medical condition for which MRC has a dedicated Highlight Notice which identifies areas where proposals are particularly encouraged. These include proposals which have a focus on the underpinning mechanisms of ME/CFS. We would particularly welcome proposals that address one or more of the research areas identified by the ME/CFS Priority Setting Partnership.

The NIHR and MRC continue to welcome funding applications for research into any aspect of human health, including ME/CFS and Long Covid; it is not usual practice to ring-fence funds for particular topics or conditions. Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.

The Department of Health and Social Care’s Chief Scientific Adviser has asked the UK Clinical Research Collaboration to convene a subgroup on ME/CFS to work with a range of stakeholders, including research funders, to drive high-quality applications for research into ME/CFS and support the research community to build capacity and capability in this field.

Department for Health and Social Care

Click this link to view the response online:

https://petition.parliament.uk/petitions/630551?reveal_response=yes

The Petitions Committee will take a look at this petition and its response. They can press the government for action and gather evidence. If this petition reaches 100,000 signatures, the Committee will consider it for a debate.

The Committee is made up of 11 MPs, from political parties in government and in opposition. It is entirely independent of the Government. Find out more about the Committee: https://petition.parliament.uk/help#petitions-committee

Thanks,
The Petitions team
UK Government and Parliament
Click to expand...

So far the petition has 11,550 signatures, but to progress to the next stage and be debated in Parliament it needs to get to 100,000. Petitions are live for six months so it has less than a month to run.
 
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