Moved from this thread: The micro-clot finding in Long Covid — implications for the possible aetiology of ME/CFS ________________ UK parliamentary petition: Fund research into any relationship between microclots and long Covid and ME https://petition.parliament.uk/petitions/605679 At time of this post it has 6,559 signatures.
I don't see the point of petitioning government to fund specific research. They will just say it's up to the funding bodies to fund high quality research projects.
I could perhaps see the point when the science is more definitive but it is likely to be a huge wasted effort at the moment. The ME Association shared it on social media earlier this week.
although I signed the petition my thought was that this is a situation where a general petition hosting site petition such as change.org would be more appropriate than a UK Parliamentary petition. As already stated even if this achieves enough signatures to force a response from the UK government that response would most likely be that it is up to the funding bodies, and in general we have seen Parliamentary petitions confined to UK citizens/residents on such specific health topics failing to get enough signatures to trigger a response. However such a petition potentially could help raise general awareness and encourage researchers, giving them something that could be cited in funding applications, in which case the more signatures the better. A general petition site is not confined to signatures from any one country on a topic like is in my view likely to attract a higher number of signatures than a purely UK petition.
Yeah, I don't feel comfortable with petitioning governments for specific research-projects. The people that divide the money should be capable enough to make those assertions and should much more info to base their decisions on than a layman like me. Petitioning for more money in general I've got no qualms with.
https://petition.parliament.uk/petitions/605679 Government response added (copied below) “Since 2018 the Government has committed over £53m to research on ME and Long COVID. Robust research and scientific evidence is pivotal in improving our understanding and treatment of both conditions. 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 a 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. Over the past 12-18 months 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 the 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 who meet the inclusion criteria) and to search for genetic differences that may indicate underlying causes or increase the risk of developing the condition. Through a cross-board highlight notice on ME/CFS, the MRC is trying to encourage applications with a focus on the underpinning mechanisms of ME/CFS. Priority areas include immune dysregulation; pain; improved sub-phenotyping and stratification of ME/CFS and mechanisms of ME/CFS in children (https://www.ukri.org/opportunity/researching-me-cfs-highlight-notice/). Where the outward symptoms for both conditions appear the same, studies looking at the underlying physiological mechanisms of either may provide additional benefit by allowing read across between the two conditions. For example, if signs of vascular dysfunction, such as microclots and platelet hyperactivation, were picked as part of the ongoing research into the physiological mechanisms of Long COVID this could also inform the understanding and treatment for people affected by ME. The NIHR and MRC continues to welcome funding applications for research into any aspect of human health, including ME/CFS and Long COVID. However, 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.” Department of Health and Social Care
Though not always strictly true, this was always the most likely Government response. I hope however people continue to sign this while it remains open; it is an achievement to reach the 10,000 trigger to elicit a government response despite only being open to UK citizens and/or UK residents. It however can now serve to stimulate researchers’ curiosity and provide evidence of public support for funding applications.
Yea one of the suggested reasons, i.e. why ME/CFS is underfunded, is that it is poorly understood, so it looses out to better understood diseases. E.g. MS has a biomarker [it was used in the recent study linking MS to Epstein-Barr virus (EBV)]; therefore, you have a well characterised study population and a relatively well understood disease. Outcome is that MS is studied (virtuous circle) and ME/CFS is not (non-virtuous circle). I think the bigger issue is that ME/CFS is labelled as "psychological", bit like "functional" neurological disorders, so it's not considered a real disease. Fact is since all of the psychological interventions have failed, in ME/CFS, perhaps that is evidence that it is not psychological! @Fizzlou
“Since 2018 the Government has committed over £53m to research on ME and Long COVID. Robust research and scientific evidence is pivotal in improving our understanding and treatment of both conditions. The statement makes it sound like they are doing a lot. Can someone breakdown the £53M? I can see figures online for £19.6 M for LC and obviously the DecodeME. Priority areas include immune dysregulation; pain; improved sub-phenotyping and stratification of ME/CFS and mechanisms of ME/CFS in children (https://www.ukri.org/opportunity/researching-me-cfs-highlight-notice/). The link for ME funding opportunities goes back to 2003 and states it’s been in place continuously since. What’s the story behind this. Was this really visible or meaningful in the last 18 years?
Haven't read the references/link PACE was by far the largest research grant £5million around 2011. Only the recently funded GWAS study (Chris Ponting - £3.5 million) comes close. My impression is that much/most funding has been whittled away on unblinded subjectively assessed trials of psychological interventions. E.g. the PACE authors were supposed to collect objective outcome data (actimetry - FitBit type devices) but they weaseled their way out of that and still got paid. So in the end they were able to claim that people so disabled that they'd fit the criteria for a lung transplant had recovered - if they'd done that with a drug they'd be lucky to escape being struck off the medical register etc. Much of the rest of it will have been whittled away on psychological interventions in adolescents - still ongoing. Since they're not adults then the fact that we know that these psychological interventions don't work for adults, doesn't mean that they cannot still be trialled on adolescents - again it looks like one of those things that should be investigated (the police/social services) - but instead it continues to be funded by the UK Government.
True but the fact that the Government agencies, like NIHR, consistently fund low quality research - unblinded trials of psychological interventions, evaluated using subjective outcome criteria (questionnaires), when objective outcome criteria are available [actimetry - FitBit etc.]; needs to be challenged. So perhaps the petition is a way to have that conversation with the lead Government Department/Minister - Department/Minister of Health and Social Care. A key thing is uncaring officials so they'll rebut the challenge ---- it's up to NIHR ++, conveniently ignoring the fact that Ministers fund/oversee/set the targets for these bodies.
My thoughts exactly. I was genuinely shocked by this; I don't think I understood enough about the situation. I think it's at minimum psychological abuse on those children and young people. Where is anyone who cares?
I wonder if it would be possible to report it to the professional body i.e. they are Doctors so BMA or whatever the regulatory body is.
For more about UK ME/CFS research funding go to this thread: https://www.s4me.info/threads/funding-of-me-cfs-research-in-the-uk.2533/
