The Government’s Final Delivery Plan ‘Should be a Watershed Moment for ME and Long COVID sufferers’

This winter the Government will publish the’s Final Delivery Plan for ME/CFS (Chronic Fatigue Syndrome), an ambitious project that has the potential to be a watershed moment for Britain’s 250,000 ME sufferers and offer hope to those with Long COVID. 

The shortcomings of ME care recently made headlines following the inquest into the death of Maeve Boothby O’Neill, who died of malnutrition in October 2021 despite writing to her GP for help, while Long COVID remains an ongoing issue as the COVID Inquiry continues.

Both illnesses present challenges in diagnosis and public perception as well as the pursuit of funding for living support via the Personal Independence Payment, PIP, system.

Although whole system change may be a popular concept among new officials the reality of a multi-agency plan dealing with such a complex condition as ME, presents a gauntlet of challenges that will likely be worked on in silos and phases, exposing the risk of not meeting sufferers needs in the short or mid-term.

A spokesperson for the Department of Health and Social Care (DHSC) confirmed to Byline Times the plan would like be published this winter and said it will “focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease”, adding that DHSC is “committed to improving the care and support for all those affected by ME”.

The final plan will be based on an Interim Delivery Plan initiated by the Conservative Government in 2022 developed in consultation with people with ME, carers, medical professionals, the DWP, DfE, NHS England, the UK Clinical research Council, and many other charitable bodies and groups.

The Interim Plan acknowledges the historically ‘low level of funded research’ into ME, proposing a series of ‘rapid actions’ to improve scope of research, education, attitudes and statutory support.

Although some of these actions have been met, including a new NHS online training module, anecdotal evidence about misrepresentation and systemic neglect shared with charities and the media suggests that an accelerated push will be needed to improve quality of life for sufferers in the short to mid-term.

Many people in the ME community are not hopeful about the prospect of new research, including Anna, * a 42-year-old academic.

“They say, ‘Oh we’ve put this money into research; we’ve found something new’ and you don’t feel like you can get excited. You can’t invest each time.”

Ondine Sherwood, CEO of Long COVID SOS, affirms the need for more research for both long COVID and ME.

“The two communities have similar challenges – fighting for recognition, being believed, and a lack of research and treatment options,” she told Byline Times.

“There is certainly an overlap between ME and Long Covid; research suggests between 40% and 60% of those with Long COVID might fit the criteria for ME, although the studies had limitations. Many people with Long COVID experience the hallmark symptoms of ME – fatigue, PoTS and post-exertional symptom exacerbation.”

Long COVID sufferer, and former A&E Doctor, Harriet, has been gifted with a professional view of research into her own debilitating condition.

“There’s a difference between naïve hope, which I harbour to a degree, and realistic expectation having been in the system for a while…there’s research and trials going on into the causes, but it feels like a long time to sit and do nothing,” she says.

Anna and Harriet have comparable views of what the impacts of any plan for sufferers of fatigue and PEM (post exertional malaise) should be. Both women agree “education” is key.

“The same prejudice that is applied to people with disabilities and people who don’t work is applied to people with ME and Long COVID, that they’re just lazy,” Harriet says, adding that the Government doesn’t seem to know much about disability: “It’s amazing how little the people ‘who know’ don’t know about living with your condition. Hopefully this government will embrace the idea that if you support people, they can do amazing things.”’ 

As suggested by The Interim Plan, online resources will form a core part of the final plan’s solution for better education on ME. However, the importance of delivering these in consultation with the ME community shouldn’t be underestimated.

On reviewing the new NHS module offering ME awareness training, Anna says: “Maybe it’s more useful if they managed to speak to people with ME and ask them to talk on camera for five minutes about, ‘This is an average day for me’ as the illness interacts so individually that it’s more than one broad story to tell.”

The root cause of poor attitudes and scant living support is, in part, connected to the problem of diagnosis. “If people don’t know what it is, don’t know what causes it; you don’t know how to treat it,” Anna explains.

In this respect, “COVID has the advantage on ME for those who have had testing,” says Harriet. “There’s a clearer cause…you can say ‘I had COVID and now I have this.”

But while Long COVID may be easier for some consultants to recognise, its treatment is less established. Harriet explains how treatment for Long COVID could be variously led by a psychologist or medical doctor depending on which borough or county you reside in. For her, the process is a source of trauma.

“As a doctor, to be told that the only way to regain feeling in my lower body was to have Psychotherapy and CTB counselling, by someone who didn’t examine me properly, really traumatised me.”

Anna’s first assessment for PIP, which she characterises as “atrocious”, led to a tribunal with an eighteen month wait time. “The reason for the tribunal in its simplest sense was that I just didn’t agree with their assessment of 0 points” Anna explained.

“So many of these cases are overturned at tribunal – I’ve heard 70% of those who take that step – not everyone has the headspace or support or is able to advocate for themselves though.”

The initial assessment form could be likened to a modern job application, in that it is points-based, and in Anna’s view, a more punitive experience than its predecessor, Disability Living Allowance. She says: “PIP feels more devastating in a way because you get a point for this, and not for that – it’s very categorical.

A widely perceived failure of this initial assessment, among both the ME and Long COVID community, is the section on ability to complete tasks. “Most people don’t qualify for PIP because they are really ill, but there’s a fluctuation there in what they can do each day…”, says Harriet.

“I qualified for PIP because I’m extreme – I met the criteria of being able to walk less than ten meters. I can’t wash my hair; it’s too heavy. I can’t do up my bra because I can’t feel my fingers. Most people are honest, but it’s not assessed fairly.”

A recent survey by the DWP showed PIP to be the only benefit in which 0% fraud was detected, backing-up Anna’s logic that, “If they trusted you; you would find it easier to trust them…and that can change from policy changing.”

Despite promise of more research, the Final Delivery Plan does present a window of opportunity for a whole system change.

From research planning to attitudes and care provision, the changes needed for ME sufferers could alter the DNA of the NHS, DWP and also offer hope for Long COVID sufferers seeking similar support.

As Anna suggests: “It needs to be a bigger a cultural shift; not just some education in this particular place for this particular group of people.”

*The names of the interviewees have been changed for anonymity.