M.E. and LONG COVID

This was the Government's response:

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

Read the response in full
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"

Only a few more days and this petition will be closed. Please share as much as possible.

Yes, Margiknot, I would have loved to take part in the DeCode ME but unfortunately I have too many other illnesses which rule me out.

Signed.

For those with CFS/MW/long covid there is a research project starting called DeCode ME looking at participants DNA . I think they are trying to work out why some people get ME/CFS whilst others don't.

Signed sparklefizz

Bumping again!

You’re welcome FannyC 😊

Signed.
Thanks for the bump Squiffy, I hadn’t seen this

Bumping this as the deadline is 5 July 2023.

signed

That's a great shame Cressida. Goodness knows why it was reported! Grrr.

I know of the study through one of the ME Groups I belong to, but can't join it because I have a number of other conditions which make me exempt. Good luck to your daughter.

My daughter was diagnosed with ME in 2001 and is taking part in DecodeME study. She answered a questionnaire and a few weeks later was sent a DNA kit.

As they still need more people for the study I started a thread but another poster reported it.

Signed. So many living with this debilitating illness and now long covid.

Thank you everyone who has signed and shared. We need all the help we can get.

Whiff

Signed. There is also a petition to get healthcare professionals to approve PIP to fast track the process. But I don't know how to do a link. If you look at Google and scroll down there is a picture of some nurses and a link to the petition.
I have been waiting a year to get a tribunal date.

Is this the one whiff
petition.parliament.uk/petitions/639467

Signed and shared.

Signed

I have signed and shared,

Have been ill with this for over 30 years. Made huge attempts to regain some health but Covid knocked me back a long way.

Signed. DiL had ME for most of her teenage years. She has recovered but fears that catching covid could bring about a relapse.

Signed. Thanks Sparklefizz for posting it here. I've had M.E. for about 20 years, and my very fit and active daughter had Long Covid for two years and still isn't completely back to normal

Signed

Signed, its so hard to get help.

Signed and shared.

Thank you for starting this thread Sparkle. The research could be so useful for all sorts of ailments. It will also make more people aware of the problems these conditions cause.

I’ve had ME for over 25 years and, like so many, had to run the gamut of ridiculous, so-called ‘medicals’ in order to get ESA, only to be turned down. They just didn’t know how to deal with fluctuating conditions or the payback after any exertion. The Tribunal took just a few minutes to overturn the original decision!

Thanks everyone. This petition only has until the 7th July to get enough signatures. I wish it had come to my attention earlier but it didn't. Unfortunately for many people with M.E. or Long Covid, signing petitions is bottom of their To Do List.

Chardy Thank you so much for what you have said.

Signed and shared

Signed. There is also a petition to get healthcare professionals to approve PIP to fast track the process. But I don't know how to do a link. If you look at Google and scroll down there is a picture of some nurses and a link to the petition.
I have been waiting a year to get a tribunal date.