Great piece again, thank you. So very disappointed to hear that ACE2 inhibitors referred to as a fad. I really wish all the amazing scientific communities could be given the same amount of funding that was afforded them to develop the covid vaccines and that the research was completed in a logical steped approach 🙏 If only one of those billionaires got long covid, they would solve it 👍not that I would wish this on my worst enemy 💙
I do wish we had a better word to use in place of ‘intolerant’ when describing how people are harmed or traumatised by stimuli that most others are physically comfortable with (BBC in Alice Barrett interview). I feel it is left open to interpretation as ‘fussiness’ or ‘disagreement’, that really doesn’t sit well with me. Is there a word that is closer to ‘tortured by’, perhaps, which feels more relevant and might make the uninformed better understanding of our conditions?
Labour is struggling to contain a rebellion by its own MPs over benefits cuts, the Guardian has reported. Its proposed killer cuts are causing a huge wave of opposition within the labour and trade union movement of which I am an activist. It is vital to keep up the pressure. I would urge people who are able to meet with their local MP on this issue and explain to them how large numbers of pwME currently receiving PIP may well lose their benefit plunging them into poverty in alot of cases.
The Benefits and Work campaign group did an FOI request to the DWP which revealed that 1.3 million people currently receiving PIP will lose the benefit due to Labour's cuts. Of the 97,000 people with neurological conditions receiving the daily living allowance element of PIP over 35,000 will lose this benefit if the cuts go ahead.
Let's be clear disabled people are already dying because of cuts to their PIP claim as revealed by the Disability News Service. The suicide rate for disabled people, an issue which the ME community shows little interest in, will rise dramatically after the cuts come in. In 2015 public health experts from Oxford University revealed that from 2010-2013 over 600 disabled people committed suicide due to the Tory governments cuts to benefits. Fighting back against the killer cuts to disability benefits is a life and death issue!
Great piece again, thank you. So very disappointed to hear that ACE2 inhibitors referred to as a fad. I really wish all the amazing scientific communities could be given the same amount of funding that was afforded them to develop the covid vaccines and that the research was completed in a logical steped approach 🙏 If only one of those billionaires got long covid, they would solve it 👍not that I would wish this on my worst enemy 💙
Spot on about stories and evidence. Both need to be neatly woven together to make a compelling case. Thank you for what you do.
Excellent as ever, thank you 🙏 💙.
I do wish we had a better word to use in place of ‘intolerant’ when describing how people are harmed or traumatised by stimuli that most others are physically comfortable with (BBC in Alice Barrett interview). I feel it is left open to interpretation as ‘fussiness’ or ‘disagreement’, that really doesn’t sit well with me. Is there a word that is closer to ‘tortured by’, perhaps, which feels more relevant and might make the uninformed better understanding of our conditions?
Thank you for all your work.
New figures assessed by Prof Chris Ponting in The Times article today put the number of sufferers at 404,000.
Labour is struggling to contain a rebellion by its own MPs over benefits cuts, the Guardian has reported. Its proposed killer cuts are causing a huge wave of opposition within the labour and trade union movement of which I am an activist. It is vital to keep up the pressure. I would urge people who are able to meet with their local MP on this issue and explain to them how large numbers of pwME currently receiving PIP may well lose their benefit plunging them into poverty in alot of cases.
The Benefits and Work campaign group did an FOI request to the DWP which revealed that 1.3 million people currently receiving PIP will lose the benefit due to Labour's cuts. Of the 97,000 people with neurological conditions receiving the daily living allowance element of PIP over 35,000 will lose this benefit if the cuts go ahead.
Let's be clear disabled people are already dying because of cuts to their PIP claim as revealed by the Disability News Service. The suicide rate for disabled people, an issue which the ME community shows little interest in, will rise dramatically after the cuts come in. In 2015 public health experts from Oxford University revealed that from 2010-2013 over 600 disabled people committed suicide due to the Tory governments cuts to benefits. Fighting back against the killer cuts to disability benefits is a life and death issue!
Thanks for your work.
I've signed the Open Letter from The ME/CFS Priority Setting Partnership: https://organise.network/s/5fe85dfdc26e
It's important to note that, historically, most research funding comes from charities and not government.
This video from Harry Boby explains that and suggests fundraising strategies: https://youtu.be/W3Ji0JTHVhs?si=DOc__oE9soqEf6p4