Paul Keeble ME/LC

@PaulRKeeble

ME since 2016 (Mild), 2019 Moderate , 2020 Severe Long Covid since March 2020 (V Severe) Funcap55 = 1.9 - 2.1 (Severe) Discourteous behaviour = block.

Joined March 2009

395Following

3KFollowers

Paul Keeble ME/LC Retweeted

Julie Sullivan@CureLongCovid · Jul 10

Our Long COVID clinic continues to receive about 100 new referrals a month. The people infected from the most recent variant have the same symptoms and severity as the Delta and Omicron group, unfortunately

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Paul Keeble ME/LC Retweeted

keep your mangos in the fridge@ArcticMangoes · 8 h

We need a generous donor to cover the wi-fi bill for @LadyLonghaul (link in comms). Being disabled and having your internet cut off is a degrading experience that acutely worsens social exclusion. Please help her stay connected - she's a community helper and a wonderful person.

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Paul Keeble ME/LC@PaulRKeeble · 8 h

The main danger in the ME/CFS delivery plan of something getting worse is the local healthcare support model. This will mean a nurse with 30 minutes eLearning being the only contact and a loss of referrals to specialists in hospitals. It could be a strategy to deny care.

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Paul Keeble ME/LC@PaulRKeeble · 10 h

It is obviously very simple and easy to show what the delivery plan should be, not least because its about giving ME/CFS patients the same thing other diseases have. This is a great short set of images of what the plan should have been.

LLucibee 🌻@_Lucibee · 11 h

Dr Alexis Gilbert has outlined what the Final Delivery Plan for ME/CFS *should* have looked like (on IG): instagram.com/p/DMa8sjPMzd2/

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Paul Keeble ME/LC Retweeted

Lucibee 🌻@_Lucibee · 11 h

Dr Alexis Gilbert has outlined what the Final Delivery Plan for ME/CFS *should* have looked like (on IG): instagram.com/p/DMa8sjPMzd2/

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Paul Keeble ME/LC Retweeted

Lucibee 🌻@_Lucibee · Jul 22

I think this is possibly the most chilling bit of the FDP. That the health minister will decide whether people with very severe ME should get a specialised service *subject to funding availability*. No. Multiple coroners have now told you this is a necessity. Fund it. Now.

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Paul Keeble ME/LC@PaulRKeeble · Jul 22

Some of the press have focused on NHS staff being trained on ME/CFS. This is not accurate. The delivery plan is only going to promote its optional (bad) eLearnings. There is no training plan to produce specialists or even have the NHS staff broadly aware of ME/CFS at all.

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Paul Keeble ME/LC@PaulRKeeble · Jul 22

Sean O'Niell criticising the delivery plan. Sadly at the end he says he likely won't continue on the ME/CFS front for his own health and wellbeing. Thanks Sean for all you have done you made a difference.

AAdam@ABrokenBattery · Jul 22

Sean O’Neill on Times Radio talking about the new government delivery plan for ME/CFS “I’ve never seen a plan that lacks detailed quite such as this. I think it you couldn’t really call it a plan at all, it’s a kind of wish list.” youtu.be/wu21bQ6GEg4?si…

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Paul Keeble ME/LC@PaulRKeeble · Jul 22

In August 2023 I responded to the draft delivery plan and wrote this blog entry. Little has changed in the final plan. I could have written this today and the actions necessary remain what needs to be done. Sadly zero progress has been made. paulkeeble.co.uk/posts/mecfs-gu…

Paul Keeble ME/LC@PaulRKeeble · Jul 22

The delivery plan is claiming its responsible for PRIME, which was actually the DecodeME team. What can you do in the face of such dishonesty form the DHSC?

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