@llamasleaves at Oak Tree Studios has published very informative template, guidance and note to help people with ME to write to their MPs urging them to attend APPG ME meetings, to help with awareness on impacts of benefit changes. More information in the article below:
I was reminded today of this moving, beautiful and anonymously written article by Maeve Boothby O’Neill at the age of 21, who was struggling with severe ME, just four years before she died from the condition. I would be upset if the content became lost, so have taken the liberty of duplicating it below.
Eight years later, as of 6th June 2025 it is still present on the website here, where you can also see comments from others about the post:
https://www.lrb.co.uk/blog/2017/june/will-i-keep-getting-my-personal-independence-payments
2 June 2017
Will I keep getting my Personal Independence Payments?
Anonymous
I’m angry. I’m so angry it woke me up this morning. And I’m angry about being angry because I can’t channel the anger into anything productive because I can’t do anything productive. I am powerless to stop being ill and I am powerless to stop being angry.
Being disabled is infuriating. Something that happened to me and was beyond my control has left me like a machine that’s been switched off – disabled – unable to do anything that a 21-year-old of my intelligence and interests might want or need to do. I have been sick for almost half my life, and housebound for the last four years. But that’s not the reason I’m angry.
At some point in the near future an agent from Atos will be reviewing ‘how [my] health condition or disability affects [my] daily life’ so that a ‘decision-maker’ at the Department for Work and Pensions can say whether or not I’m still entitled to Personal Independence Payments. It’s not enough for my doctors to write letters saying that I have a chronic condition and there’s been no meaningful change since the time of my claim 28 months ago. The date of the appointment has been changed four times in four weeks, sometimes with less than seven days’ notice, presumably because disabled people don’t have lives of their own. Exactly what kind of ‘independence’ did they have in mind?
I would like to ask the Atos agent if s/he likes her/his job, whether s/he does anything else besides interrogate disabled people, and why s/he thinks a 21-year-old would lie about not having been well enough to see anyone but their care workers, health professionals and mother since 2015, but I won’t. The DWP’s letters are aggressive, in an understated way, with the result that I don’t feel secure asking the Atos agent questions or even putting my name to this piece.
Most conventions and laws and declarations on human rights agree that I have a right to life, and a right to be as healthy as I’m biologically capable of being. Supposedly, I also have a right to keep my life private. These rights are qualified in this country by a mean and punitive government that would prefer it if unemployed people and displaced people and disabled people didn’t exist – supposedly with the mandate of public opinion. I’m not ‘sleeping off a life on benefits’ (if only: being disabled is tiring but also physically painful, and it’s hard to sleep when you’re in pain) but perhaps my Tory-voting neighbours think that I’m stealing from them. They earn enough to pay tax and I’m sick enough to claim benefits. Actually, welfare. It isn’t a perk. Welfare payments are what you claim to keep you housed, warm, clothed, fed, safe, alive.
PIP is meant to compensate disabled people for the added financial cost of living in a world that doesn’t make room for them. If I ever get to see the Atos agent, s/he will ask me several pages of questions about how my life is affected. The Atos agent will come to my home because I’m too unwell to go to the private health centre s/he uses – that isn’t sufficient evidence of how I’m affected, because I could be faking. To access my right to this welfare payment I am required to prove my life has been devastated, presenting it as a collection of medico-historical facts about all the things I can’t do, which reminds me of all the things I might have wanted to do and makes my existence sound abject and pitiful. Having abased myself, I will, I hope, continue to receive the playing-field-levelling amount of £76.90 per week.
https://www.lrb.co.uk/blog/2017/june/will-i-keep-getting-my-personal-independence-payments
https://petition.parliament.uk/petitions/721547
https://organise.network/actions/petition-stop-proposed-changes-to-pip-zqTA0zIpHYQ/saf/take-action
We urge the Government to:
Cease any changes to PIP eligibility that would reduce access for those in genuine need. Maintain inflation-linked increases to ensure PIP keeps pace with the cost of living. Conduct a transparent and meaningful consultation with disabled people and advocacy groups before implementing any reforms.
We stand against policies that put financial strain on disabled individuals and demand fair, compassionate, and well-evidenced reform.
Sign this petition to protect the rights and support of disabled people in the UK.
Tessa Munt, officer of the APPG for ME, announced that 100% Liberal Democrat MPs have now signed a letter urging Wes Streeting and Ashley Dalton to back the ME/CFS Delivery Plan with the funding required to properly implement it.
Tessa Munt – “I’m so delighted that all 72 LibDem MPs signed this letter to @wesstreeting @AshleyDalton_MP asking the govt to back the ME/CFS Delivery Plan with the resources it deserves. May this be a huge encouragement to the ME community and the start of meaningful change. #WorldMEDay”
https://action.sense.org.uk/page/169317
The government is proposing making changes to the benefits system. This tool helps you write a response to their consultation. It is designed for disabled people and their families.
The government’s changes are complicated, so we’ve broken things down into four main proposals. Here’s how it works:
- We’ll ask a question or two about each proposal and suggest some things to think about in your answer. You don’t have to respond to every question.
- We’ll compile all your answers into one response.
- Copy this response into an email to send to the Department of Work and Pensions.
This should take about 20 minutes to complete. While that might seem like a lot of time, it’s much more effective to take the time to write a consultation response that is tailored to you.
Continue to complete the form here: https://action.sense.org.uk/page/169317
