Most ME patients have issues with collagen and it leads to problems with their backs and necks. Most don’t get any diagnosis and have to live with the pain it causes and wear collars. The NHS still treats the vast majority as if they are mentally ill patients with CBT and exercise, neither of which has any evidence it does anything but hurt them. There is no treatment or cure, the few ME patients that had their neck CCIs repaired have found it didn’t help. The UK spends no money on researching the condition and we have very poor estimates on how many sufferers there are as the NHS mostly doesn’t diagnose them and doesn’t visit them when they get stuck at home. Its estimated there are around 500k sufferers of varying severity, some 250k are unable to work.
Stories like this break my heart and are my biggest fear. What a horrific way to live. I hope the money can be raised!
> The family said the expert was the only one in the world specialising in reversing neck fusion operations and has told them Jenny would require at least three surgical procedures to offer any hope of improvement.
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>But it comes at a price.
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>Jenny would need a full medical air-evacuation team to get her to the United States, then there would be the cost of surgery and recuperation.
Could the surgeon come to the UK? It would seem more cost effective (even if the surgery itself was privately done).
The DWP will suggest she gets work as a scarecrow or something ridiculous like that. People with ME, CFS and similar conditions are treated as lazy, even though their conditions are still not fully understood by medical science. One benefit of long COVID is that it is prompting research into these conditions due to the similarities of the symptoms of the conditions. Hopefully, this will lead to better treatment and less stigma.
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Most ME patients have issues with collagen and it leads to problems with their backs and necks. Most don’t get any diagnosis and have to live with the pain it causes and wear collars. The NHS still treats the vast majority as if they are mentally ill patients with CBT and exercise, neither of which has any evidence it does anything but hurt them. There is no treatment or cure, the few ME patients that had their neck CCIs repaired have found it didn’t help. The UK spends no money on researching the condition and we have very poor estimates on how many sufferers there are as the NHS mostly doesn’t diagnose them and doesn’t visit them when they get stuck at home. Its estimated there are around 500k sufferers of varying severity, some 250k are unable to work.
Stories like this break my heart and are my biggest fear. What a horrific way to live. I hope the money can be raised!
> The family said the expert was the only one in the world specialising in reversing neck fusion operations and has told them Jenny would require at least three surgical procedures to offer any hope of improvement.
>
>But it comes at a price.
>
>Jenny would need a full medical air-evacuation team to get her to the United States, then there would be the cost of surgery and recuperation.
Could the surgeon come to the UK? It would seem more cost effective (even if the surgery itself was privately done).
The DWP will suggest she gets work as a scarecrow or something ridiculous like that. People with ME, CFS and similar conditions are treated as lazy, even though their conditions are still not fully understood by medical science. One benefit of long COVID is that it is prompting research into these conditions due to the similarities of the symptoms of the conditions. Hopefully, this will lead to better treatment and less stigma.