Campaign update #10: Reasons to be cheerful
We’re chasing the autumn blues away
With the nights drawing in and temperatures dropping, raise your hand if you’ve been having a touch of the blues. Living with, or caring for a loved one with, ME or Long Covid can be a bleak experience at the best of times, but this time of year can be especially difficult.
Avoiding Covid and colds (of which there seem to be a lot around) can make it difficult to spend time with friends and family. Occasions like Halloween, Bonfire Night and Christmas can make it hard not to think back to happier celebrations in years gone by.
Current events may add to the melancholy. For those in the community depending on disability benefits, it’s hard not to feel the recent Budget and talk of a push to “Get Britain Working” adding to already considerable stress and uncertainty. And for those of us following the glacial progress of the cross-government Delivery Plan for ME, announced a whopping 30 months ago, it’s hard not to feel disillusioned that it hasn’t yet seen the light of day.
We’re afraid #ThereForME doesn’t have the magic sauce to banish the blues completely - and if you’re struggling, please know that you’re not alone. We wanted to share three reasons to be cheerful, as we look for some islands of (dim) light in what can feel like a sea of dark.
Reason #1: MPs are showing up for ME and Long Covid in Parliament
We decided that October would be ‘Parliamentary Scrutiny Month’ and we were delighted to see MPs delivering. In October we saw a grand total of 22 written questions in Parliament on the topics of ME and Long Covid, delivered by 10 MPs across four parties. The questions that were asked spanned a range of topics: from the economic impacts of ME and Long Covid, to plans to leverage international cooperation to accelerate biomedical research.
While some of the responses raised more questions than they answered, they’ve highlighted key gaps in current plans and thinking around ME/Long Covid. Not least, putting on the public record that the Department of Health and Social Care:
has made no assessment of the impacts of ME and Long Covid on the UK’s economic growth.
has no estimate of the number of NHS employees who have taken early retirement or had their employment terminated as a result of Long Covid.
has made no assessment of the adequacy of the safety of NHS care for people with Severe and Very Severe ME.
cannot comment on whether the upcoming Delivery Plan will include measures to improve the safety of NHS care for people with ME.
Reasons to be cheerful? Not quite. But with big gaps like these it’s a good thing we’ve got MPs piling on the pressure. In particular, we were really happy to see Lib Dem MP Tessa Munt taking to Twitter/X to express her support and determination to push the conversation forwards. Thank you Tessa!
Last week we also sent a letter to the House of Commons Health and Social Care Committee, co-signed by 28 organisations and smaller initiatives, calling for an inquiry into inadequacies, present and historic, in care for people with ME and Long Covid. We wanted to say a big thank you to all of you who wrote to MPs on the Committee to draw their attention to the letter - and if your MP is on the Committee, it isn’t too late. Everything you should need, including a list of the MPs and constituencies we’re targeting, is here.
Reason #2: Our community is awesome!
In the past few weeks it’s been hard not to notice the incredible efforts that people in the ME and Long Covid communities have been making in order to get their voices heard.
The number of radio phone-ins focused on ME and Long Covid has ramped up lately. Last week, Radio 5 Live’s Nicky Campbell hosted a show that asked for experiences of Long Covid. While the start of the show included some dubious fringe science (if you know you know), it was great to hear caller after caller explaining the severity of Long Covid. Rebutting some of the sketchier claims we hear about Long Covid, a psychologist with a PhD in CBT explained how, from his experience, "I can categorically say you cannot think your way out of Long Covid”.
Following headlines about the UK’s rising benefits bill, LBC’s James O’Brien also got in on the act with a Long Covid phone-in of his own. In his opening monologue, James put across his view that:
“You have to conclude that an awful lot of people have not received the help they need to recover from Covid-related conditions. And I don’t fully understand why people have been so shy of this, so wary of this.
[...]
I don’t understand why the almost certain contribution [...] to this constituency of Brits - people who are signing on for poor health benefit payments - ignores the fact that almost every single family in this country will either contain someone, or contain someone who knows someone, who thinks that they have, or knows that they have, what could very loosely be described as Long Covid.”
James O’Brien’s comments came last week as our friends at Long Covid SOS released survey data, collected by YouGov, finding that a staggering 1 in 3 Brits knows someone with Long Covid. His comments also came as evidence given in the ongoing Covid inquiry by Long Covid Support’s Nat Rogers highlighted the difficulties people with Long Covid - like those with ME before them - have faced seeking safe and appropriate care. Nat highlighted clear recommendations for action that could be taken now, including increasing funding for biomedical research and ensuring clear air in public spaces.
We’re grateful to the many other ME and Long Covid advocates out there for everything they’re doing to get their - and all of our - voices heard. There’s some incredible people in our community and you give us all a lot of hope.
Reason #3: Glimmers of light
Finally, we are all always on the look-out for even the smallest glimmers of light in the darkest days of ME/Long Covid. We’re not here for toxic positivity - and sometimes it can be healthy to acknowledge that what we’re all going through is just the worst. But here are some little things that made us smile this week in #ThereForME HQ.
This weekend Karen’s husband, James, who has Very Severe ME, was able to send her an auspicious message to let her know that he liked her new pyjamas.
Last week Oonagh was excited to discover a whole new chronic condition, Long TB, and to meet some of the academics working on it. She came back from her trip to Oxford brimming with enthusiasm about the researchers joining up the dots and working to advance our understanding of infection-associated chronic conditions.
There is another James! Emma’s partner, who also has Very Severe ME (and Lyme), was well enough for her to tell him a little about #ThereForME. Over several days, he dictated a poem for the campaign.
We asked around and we’re not the only ones spotting little glimmers of light amidst the autumn gloom.
A friend of the campaign, who cares for her husband with Very Severe ME, shared a whole ray of sunshine. Her husband has been sick for over a decade and recently has seen a big improvement in his cognitive symptoms. She told us how incredible it is to see someone “surface” and be himself after so many years of being so sick. While she remains uncertain how long it will last, she told us what a miracle it feels like to get him (partly) back and how much hope it gives her for other people with ME.
If you’re feeling up to it, share your own glimmers of light in the comments. Or, if you’d prefer, let’s complain together. Either way, you’re not alone.
We’ll see you next week.
Thanks for the cheerful uplifting update.
You mention the government's attacks on disability benefits which should be of major concern to everyone. Since taking ill health retirement from my job I am now on ESA/PIP and am deeply concerned by the reactionary rhetoric coming from Liz Kendall, Starmer and Reeves. Numerous disabled people's charities (Disability UK, Work and Benefits amongst many others) have lambasted the government for its reactionary rhetoric which in effect is portraying disabled people as a burden on society when the priority of this government is so called 'working people'.
The Disability News Service is extensively reporting on how the government is resurrecting many Conservative attacks on disability benefits. The new government wants to spy on people's bank accounts as part of its so called 'anti fraud' efforts and it wants to continue the Conservative government's plans to 'reform' the work capability assessment with the express objective of cutting the numbers of people on benefits and imposing huge cuts in the amount of money many disabled people receive.
The current government will continue with benefit sanctions which have led to the deaths of hundreds, if not thousands of vulnerable people. John Pring, the editor of the Disability News Service has a powerful new book (The Department) out which chronicles in forensic detail how the actions of the DWP, which were covered up by government ministers and never questioned by opposition MPs, directly led to the deaths of so many disabled people.
Even more disgraceful is Liz Kendall has floated the idea of work coaches visiting people in mental health wards to pressure them into work.
As an aside, In 2019 I did several FOI requests to the DWP which revealed that 50% of people with ME who applied for PIP were having their PIP applications rejected.
This all continues the systemic violations of disabled people's human rights as documented by the UN Disabilities Committee Report issued in April 2024. I would urge all people to read this 14 page document it is a real eye opener and reveals how we do not live in a civilized society. As a civilized society would not treat its most vulnerable citizens so terribly.
I have had ME for almost 2 decades but only received a diagnosis, of CFS, in 2010. I recently saw a neurologist who also diagnosed CFS and neurological dysfunctional disorder, as is common practice as I gather. I wrote back to him asking him to change the diagnosis to ME as it encompasses so much more than chronic fatigue.I told him that in my experience medical professionals don't tend to know much about ME and that awareness needs to be raised. I also added some symptoms which weren't mentioned. I guess I won't receive a reply until next year, if at all, but I'm keeping my fingers crossed.