MrMagoo
Senior Member (Voting Rights)
Are they for real?
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United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)
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Utsikt
Senior Member (Voting Rights)
«I want to spend time promoting my incomplete plan instead of trying to make it more complete.»
It’s nice to see someone pointing out the blatant discrimination.
Your thoughts are not sufficient, and they are clearly not with us when you only want to focus on your other plan!
BrightCandle
Senior Member (Voting Rights)
Its going to get rolled into the 10 year plan and effectively cancelled, seems inevitable at this point. They have no clue what to do and they refuse to provide any funding anyway.
The MEA ais quite rightly being challenged about what they’re going to do about this and I don’t think they mean just in terms of the delay but in terms of the absence of anything to deliver anything for this misrepresented, harmed and neglected community.
I don’t think that type of challenge is gonna be well received but I think there should be a major questioning of why the MEa & AFME has never organised campaigns on services or research, even during this process, which is atypical for national charities. The patients saw the absence of ambition and sought to apply external pressure, which is basically what charities do to turn up the heat, to make it less possible for a government to carry on ignoring you and our charities ,refused to publicise or support. ? There’s a possibility that they felt during a negotiation that they couldn’t take on a campaigning role. I don’t know if that’s right. However , if they carry on thinking that they can just resume whatever actions they were doing before this, they’re wrong and if the government thinks this problem can be just swept under the carpet when it’s an injustice, they’re wrong. Enough is enough
Long Covid has shown what the government can do for this type of illness both in terms of swift set up of services and immediate dedicated funding and there’s no reason whatsoever it cant do the same for m.e
I hope that a patient campaigners launch a really strong campaign because this government has got a weak spot now, it’s known for being cruel to the vulnerable- regarding the fuel tax , regarding PIP and also there’s recognition that there’s been these great scandals/ injustices and as far as I’m concerned m.e is one of them. So we should be retaliating hard with the support of Lib Democrats & the greens
. I think we need to make noise until they reverse this decision and part of the reason they thought they could get away with this decision was because as well as stigma, we’ve been very very quiet.
Obviously there’s been scepticism / concern for a long time amongst informed patients because the draft was lame but I think the community is gonna be stunned that the government thinks it can take three years of our desperate lives on a review and consultation that was supposed to take a few months and are still coming back with no funds
I don’t think that type of challenge is gonna be well received but I think there should be a major questioning of why the MEa & AFME has never organised campaigns on services or research, even during this process, which is atypical for national charities. The patients saw the absence of ambition and sought to apply external pressure, which is basically what charities do to turn up the heat, to make it less possible for a government to carry on ignoring you and our charities ,refused to publicise or support. ? There’s a possibility that they felt during a negotiation that they couldn’t take on a campaigning role. I don’t know if that’s right. However , if they carry on thinking that they can just resume whatever actions they were doing before this, they’re wrong and if the government thinks this problem can be just swept under the carpet when it’s an injustice, they’re wrong. Enough is enough
Long Covid has shown what the government can do for this type of illness both in terms of swift set up of services and immediate dedicated funding and there’s no reason whatsoever it cant do the same for m.e
I hope that a patient campaigners launch a really strong campaign because this government has got a weak spot now, it’s known for being cruel to the vulnerable- regarding the fuel tax , regarding PIP and also there’s recognition that there’s been these great scandals/ injustices and as far as I’m concerned m.e is one of them. So we should be retaliating hard with the support of Lib Democrats & the greens
. I think we need to make noise until they reverse this decision and part of the reason they thought they could get away with this decision was because as well as stigma, we’ve been very very quiet.
Obviously there’s been scepticism / concern for a long time amongst informed patients because the draft was lame but I think the community is gonna be stunned that the government thinks it can take three years of our desperate lives on a review and consultation that was supposed to take a few months and are still coming back with no funds
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It's possible some people from the MEA, AfME and other groups have been applying pressure.
However, until we see what is in the plan, we won't know whether it's been worth the wait, that there is no promise of extra money for ME/CFS services.
Given that the MEA won't even tell us what the people they have employed to advise on ME/CFS services are advising, and what their toolkit already rolled out to some ME/CFS clinics contains, I don't think the MEA are the best people to ask to fight this. I'd rather they got their own house in order.
However, until we see what is in the plan, we won't know whether it's been worth the wait, that there is no promise of extra money for ME/CFS services.
Given that the MEA won't even tell us what the people they have employed to advise on ME/CFS services are advising, and what their toolkit already rolled out to some ME/CFS clinics contains, I don't think the MEA are the best people to ask to fight this. I'd rather they got their own house in order.
Meanwhile , this is happening for Parkinson’s, which already has some treatments and large public & private investment, it affects half our numbers and an older demographic.. The MRC apparently are the main funders of the DRI.. https://www.ukdri.ac.uk/news-and-ev...n-forces-establish-pioneering-research-centre
“Marking a pivotal moment in brain health research, the UK DRI has united with Parkinson's UK to establish a new £10m research centre dedicated to better understanding the causes of Parkinson’s and finding new treatments to prevent, halt, and ultimately find cures for the condition..
The UK DRI and Parkinson’s UK will each invest £5 million over five years to drive forward vital research. The centre will identify new approaches to Parkinson’s prediction and prevention, alongside the development and testing of new treatments to prevent the onset, and slow or even reverse the progression of the condition.”
Prof Patrick Chinnery, Executive Chair of the Medical Research Council, said:
“As the UK DRI’s leading funder, we welcome its partnership with Parkinson’s UK and the creation of the new Parkinson's Research Centre. To develop effective treatments for degenerative brain diseases we need to better understand how the brain processes malfunction. What we learn from one neurodegenerative disease could help us find treatments for another, so bringing all this additional expertise together with the world-class research at UK DRI should help us to accelerate towards finding treatments for Parkinson's"
www.parkinsons.org.uk
www.parkinsons.org.uk
“Marking a pivotal moment in brain health research, the UK DRI has united with Parkinson's UK to establish a new £10m research centre dedicated to better understanding the causes of Parkinson’s and finding new treatments to prevent, halt, and ultimately find cures for the condition..
The UK DRI and Parkinson’s UK will each invest £5 million over five years to drive forward vital research. The centre will identify new approaches to Parkinson’s prediction and prevention, alongside the development and testing of new treatments to prevent the onset, and slow or even reverse the progression of the condition.”
Prof Patrick Chinnery, Executive Chair of the Medical Research Council, said:
“As the UK DRI’s leading funder, we welcome its partnership with Parkinson’s UK and the creation of the new Parkinson's Research Centre. To develop effective treatments for degenerative brain diseases we need to better understand how the brain processes malfunction. What we learn from one neurodegenerative disease could help us find treatments for another, so bringing all this additional expertise together with the world-class research at UK DRI should help us to accelerate towards finding treatments for Parkinson's"
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I’m not begrudging Parkinson’s at all, and completely sympathise with your person who suffered. Late stage Parkinson's isn't something I know much about it but if it's associated with dementia then that's terrible. But I’m saying that m.e is being treated as less worthy and in my opinion is not. And m.e is destroying some lives at a younger age and I think that's a key point, it's terrible whatever age you suffer but it's at least if you've had a life by the time you're 50 , you can look back on your wonderful teens and time at university and travels around the world and the family you reared, and you career and so many people with m.e aren't getting that opportunity..
On Facebook, Dr Charles Shepherd has answered some of the what ifs, says sent a critical letter in response & orgs will discuss what to do next.
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Well, that's very disappointing but not at all surprising. I guess the hope for UK research funding lies solely with the Edinburgh/AfME initiatives.
Obviously I want treatments as fast as humanly possible, but in the meantime I would really love it if I could be treated like what I am - a person who through no fault of their own (and in fact the fault of poorly informed clinicians) has become severely disabled and needs care and medical attention that reflect that and cater to the needs of my particular disability. That really isn't too much to ask.
I have a lot more hope than I did this time last year but the prospect of spending more years as a medical pariah fills me with deep dread.
The afme initiative is re. infrastructure and totals £850 000 vs the £50m of ring fenced funding tos et up a research and clinical trials program that long covid was Given - part by Sajid Javid, ironically, at the wave of his hand. We should have had the same, immediate resources for research and services.
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Completely agreed.
Jonathan Edwards
Senior Member (Voting Rights)
I don't think this "plan" was ever going to be anything. The only thing that headway can be made on at present is research and that will happen, but not through this process.
We need progress on care for very severe cases too but the right people are not going to present themselves until the research has moved forward. There are plenty of wrong people who would be happy to soak up £500M if offered now and pour it down the drain.
And the specialist hospital based care is directly against Streeting's strategy. It would immediately be replaced by multidisciplinary garbage "in the community".
Better not to get involved with the current fiasco.
We need progress on care for very severe cases too but the right people are not going to present themselves until the research has moved forward. There are plenty of wrong people who would be happy to soak up £500M if offered now and pour it down the drain.
And the specialist hospital based care is directly against Streeting's strategy. It would immediately be replaced by multidisciplinary garbage "in the community".
Better not to get involved with the current fiasco.
rvallee
Senior Member (Voting Rights)
At least when something is found, the medical profession and governments will have made it 100% clear that they never even wanted to try. There will be zero ambiguity about why no progress happened: because they literally couldn't be bothered, flat out refused to do anything about it. Again and again and again and again, at every single opportunity.
Something we have known for years, but retroactively it will simply not be plausible to argue that they were not explicitly and intentionally on the side of choosing to fail.
By comparison it almost makes the tobacco industry honest about what they did: they did if for the money. And they did make a lot of money. The medical profession and governments are doing something similar, it's costing all of them a lot, they're all losing billions and billions, and it's exactly what they want. They want this because they have beliefs, but they want exactly this nonetheless.
rvallee
Senior Member (Voting Rights)
Gotta say, though, that it's very fitting coming from psychosomatic ideologues to produce a plan that is not a plan, contains absolutely nothing that is normally part of an actual plan. It defines them perfectly for what they choose to do day in and day out. Liars and frauds, the whole lot of them.
I am at the point where merely getting the psycho-tyrants off my back for what remains of my
Though, of course, I would love a good treatment or a cure as much as anybody, and want competent research into it to continue on, and expand where possible.
Yes, we seem to be running hard into rapidly diminishing returns, and just more disappointment and heartache for any efforts.
So probably best we don't spend too much more time and energy on it all, for now at least.
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As nice as that would be (and it would be great) the rest of my existence will still be pretty unbearable without an effective treatment.
I would be very happy to be able to tell people about my illness without the fear of disbelief and the shame and misunderstanding that BPS dominance causes. Especially healthcare workers. and getting safe mental health care would be incredible.
But ultimately, treatment is essential.