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2024 was the year my 18 year-old daughter's symptoms deteriorated and we have had to learn all about ME/CFS, POTS, dysautonomia etc.

I have been shocked to find that NHS provision is so limited, and angry to find that our experience with a dismissive GP was very much the norm. In a year when my beautiful girl should be going off to university, she now lives a very limited life and I am her full time carer. Finding a community on Substack has been everything, and the work that you all do in fighting for recognition and action, while surviving your own challenges, gives us some hope for the future. Thank you ❤️

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Thank you so much Karen. I’m wondering if those of us who try to keep posting on social media could somehow link to accelerate your key strategies beyond reposting. Though very cognitively limited I’m sure a lot of us would love to build on your ideas being pro-active rather than constantly reactive.

As ever I’m so grateful to the three of you for bringing fresh hope to the community.

I’m so very sorry about James’ continuing problems. As ever I’m tentatively hoping for a miracle.

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I can't overemphasise how much the advent calendar helped me this winter. I joined Bluesky so I could follow it. Thank you all.

Action for M.E are very helpful (I am benefitting hugely from their counselling service). But #ThereForME has urgency, which is needed as we watch ourselves or those we love with M.E & Long Covid deteriorate with little or no help, guidance or treatment. I wish Karen, James, Emma and partner, and Oonagh all the very best.

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Thanks for the update and for all you have done this year.

The ME community has to start off with a recognition that we have a government committed to further austerity with spending across numerous government departments going to be cut.

In a recent meeting with a senior decision maker from my regional ICB he told that they have been instructed by NHS England to continue operating in 'austerity mode'. He explained that the much publicised increase in funding for the NHS is going to be swallowed up in funding staff pay increases, the national insurance increase for employers and essential capital expenditures on hospitals. He said there would be no new money for hiring extra staff. He was very frank and said that there would be no money with which to improve health services for pwME. Thanks to our campaigning work we have managed to get an ME coordinator for our region to be appointed for 1 year but this person has no budget and is only able to 'signpost' NHS primary care services to various issues affecting pwME.

We have a government which is also going to continue undermining the human rights of disabled people with its 3 billion worth of cuts to disability benefits which will undoubtedly lead to the deaths of more vulnerable claimants. In an FOI request I did in 2018 I found out that 50% of pwME applying for PIP were having their claims turned down. So I hate to say it but I am not optimistic for next year.

If you read the responses of the UK medical establishment (NHS England, NICE, Dept of Health MRC etc) to the corners prevention of death notice for Maeve Boothby O'Neill there is obfuscation, gas lighting, complacency and a complete lack of urgency. Most critically there is no mention of extra funds/resources to improve the lives of pwME.

I've been a political activist for over 30 years and being an ME advocate is the hardest thing I've

ever done. We face a medical establishment which is indifferent to our plight. The ME community has to forge alliances with different groups in society including the unions if we are to get anywhere.

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Wow thank you for the info - it’s galling of course, but important we know more detail about what we’re facing or we can’t fight.

Totally agree about joining forces with other groups as there’s strength in numbers and it’s harder to ignore.

I also think we need the public to see what severe and very severe ME looks like – people don’t understand how extremely harrowing it is (Karen used that word and it’s exactly right) and I think there would be outrage if people truly understood what a crisis we are in (and have been for decades). If they understood this disease could be as bad as cancer and motor neurone disease then they may be motivated to fight with us.

Thank you to everyone at There For ME – you truly couldn’t have done any more for us and I’m so very grateful to you!

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