UK Parliamentary question re medical research for ME

[slysaint]

What I'd like to see would be a question from an opposition MP to the Health minister (rather than Business, Energy and Industrial Strategy) asking why the government has not stepped in to address the scandal of NICE guidelines based on patently bogus theories and why the Department of Health is not addressing a wealth of new research across the Atlantic which suggests that the UK has been heading down the wrong road on ME for decades. What does the minister propose to do about that?

So ask them. I've been emailing MPs left right and centre (literally)

 

[sarah darwins]

So ask them. I've been emailing MPs left right and centre (literally)

I do write to MPs, too. I have a nice collection of 'thank you for your letter' letters

As pointed out above, I have already written to Alex C this morning.

 

[sarah darwins]

I got a reply from Alex Chalk. He says he does indeed intend to do more, though doesn't say what. And otherwise he just suggests I contact my own MP — which I've previously done, but my own MP is a government minister and just trots out the "we're making every effort" line.

Oh, well. You never know when one of these folk will decide it's time to kick the can a bit. Maybe Alex Chalk will be the one. Maybe not. It will need an MP with some serious guts to do what needs doing here.

 

[*GG*]

Well, he's the MP for Cheltenham so if any of his constituents are browsing this board they could contact him to thank him for his interest. And hopefully one of the ME charities will get in touch to follow up on his question, if they aren't in contact with him already.

Might be good to start a thread to bring more awareness, and have a point for people to collaborate. Be descriptive, in case someone does a search engine site, it might come up here, and help bring more Sickies like us out of the Shadows, and help give voice to those who cannot!

I hope that others will contact him too and ask him to ask other questions and not leave it to maybe just one person out there pushing him to do so

Good point!

GG

Edit: Figured out Multi Quote, tried to do that the other day. Got sidelined, couldn't figure it out. Did today!

 

[taniaaust1]

Edit: Figured out Multi Quote, tried to do that the other day. Got sidelined, couldn't figure it out. Did today!

congrats, I dont have the multi quote figured out myself and do those quotes all from scratch.

 

[taniaaust1]

I got a reply from Alex Chalk. He says he does indeed intend to do more, though doesn't say what. And otherwise he just suggests I contact my own MP — which I've previously done, but my own MP is a government minister and just trots out the "we're making every effort" line.

You can always mail again and ask for the "we're making every effort" details and ask them to list what is being done.

Im dealing with my own health minister who also has given me an extremely vague reply to my question on where does ones with severe ME/CFS get help from if they need carer support etc, which actually didnt help at all as it still would leave my doctors clueless on where to refer me to for more help, so now trying to get the response in more depth.

We need to keep on pushing these parliament people till we do get some answers.

I do not think we have done enough as a community in any country as far as dealing with parliaments. Instead we have wasted so much energy in trying to fight our battles much lower down and failed.

 

[Solstice]

congrats, I dont have the multi quote figured out myself and do those quotes all from scratch.

Add quotes to the multiquote by clicking on it under the messages. Then scroll down to the end of the page, there's a little button called more options. Click that. Then you'll see an option to insert quotes.

 

[TiredSam]

Add quotes to the multiquote by clicking on it under the messages. Then scroll down to the end of the page, there's a little button called more options. Click that. Then you'll see an option to insert quotes.

Wow that's clever. I'd given up trying to work out multiquote.

 

[AndyPR]

You can also highlight (click+drag) parts of a message and you should get an option automatically appear to either reply or add to multiquote using the highlighted text only.

When you have quotes in the multiquote system, an option should appear to Insert Quotes, this will not be available when you haven't stored any quotes e.g.

The Insert Quotes button will give you the screen below, where you can remove quotes and change the order that they will appear in. Once you hit the Quote These Messages button, ALL the quotes will appear in a new reply to the thread you are currently viewing, you can then obviously add text and otherwise edit this new reply created.

Hope that makes sense and helps.

 

[Mark]

Hey, it's about half of what the US currently spends. I would take it, and build upon it. I know the Solve ME/CFS Initiative in the US thinks they could do lots with that kind of money! Start building the Foundation for further study in the future!

http://solvecfs.org/research/research-programs-for-patients/clinical-research-trials/

Guess the Newsletter with Summer 2016 article is not posted Yet: http://solvecfs.org/get-involved/research1st-news-archive/

Also, seems more than Canada will spend, not sure about Australia? Forget the rest of the world. LOL Where is the rest of the world on research actually? I know some research comes out of Japan, but leaves a hell of a lot of Countries out of the picture!

GG

It may be about half of what the US spends per year, but that 2.1m is what UK has spent in total in about the last 5 years or more! 10 years ago the average used to be 850k per year, then one year there was nothing, the next year 1.5m which was presented as a major new investment, and in several years since then just 600k total which has now been presented as 2.1m. We need the per annum figures for the last decade, which were in the past routinely obtained through parliamentary questions but I haven't seen those figures for many years. The already pitiful budget has been slashed, and presented as a big investment in a 'priority area' for research funding. The cuts have accelerated even as the science elsewhere in the world has moved on in leaps and bounds, and it's an absolute disgrace. We need the right parliamentary questions and pressure on this issue IMO. Start is the figures per year for the last decade, to compare with the already known figures for the previous decade.

 

[sarah darwins]

The already pitiful budget has been slashed, and presented as a big investment in a 'priority area' for research funding. The cuts have accelerated even as the science elsewhere in the world has moved on in leaps and bounds

When I wrote to Alex Chalk the other day I did make that point — that the UK is missing a trick and falling behind other countries, especially the USA, in what promises to be a very fruitful (and ultimately profitable) field of medicine. I feel that's a useful line to push to get more people on our side. And it's even true!

 

[trishrhymes]

I don't suppose Mr Johnson did any more than read out the response his staff supplied him with. Likely to be a case of words passing from paper to mouth without engaging brain!

However I do think it's worth all of us in the UK (who are well enough to manage it) writing to our MP's to ask for the NICE guidelines to be changed in the light of the recent revelation that the PACE data had been distorted by the researchers to make a null finding look positive. Also we could ask specifically about biomedical research pointing out that the biopsychosocial has been proved wrong for ME by the null outcome of PACE and FINE, and therefore no more money should be spent on it.

There is so much that needs to change - research funding, stopping CBT/GET clinics and trials, re-educating doctors, changing NICE guidelines, text books, medical training, suing psychiatrists who have made sufferer's worse, getting PACE retracted. It's tempting to ask our MP's to try to sort all this out, which is unrealistic. But letters asking for 1 or 2 specific areas of action might at least raise awareness and suggest there are specific actions that would help.

If anyone's interested, I've put up as a PR blog a copy of the letter I've just written to my MP explaining why MAGENTA must be stopped and NICE changed. I don't suggest you send the same letter - it's too long really and includes stuff about my own situation, but feel free to mine it for ideas!

Maybe when/if I get a response from my MP I'll start a thread specifically for us to share our letters and responses. What do you think?

Edit: Ooops, sorry I wrote and posted this before I realised there was a second page of comments on this thread. Good to see others are writing to their MP's too. Maybe one day some of them will actually take us seriously.

 

[Cinders66]

Hey, it's about half of what the US currently spends. I would take it, and build upon it. I know the Solve ME/CFS Initiative in the US thinks they could do lots with that kind of money! Start building the Foundation for further study in the future!

http://solvecfs.org/research/research-programs-for-patients/clinical-research-trials/

Guess the Newsletter with Summer 2016 article is not posted Yet: http://solvecfs.org/get-involved/research1st-news-archive/

Also, seems more than Canada will spend, not sure about Australia? Forget the rest of the world. LOL Where is the rest of the world on research actually? I know some research comes out of Japan, but leaves a hell of a lot of Countries out of the picture!

GG

The figure is a total lump sum, not the year by year NIH figures we have access to

The NIH figures are per year about $5m which is about £3.5m for a population of 250,000 so it's the equivalent of about UK £700-900 000/ year as we are 3-4 times smaller. In reality UK are investing far less than USA as the £2.1m is the total figure given to biomedical research this decade I think , and the spend before that was negligible so divide that £2.1m by 5,6 7 , 20 years however you wish to start counting, it's peanuts .

UK CFS climate has been disastrously mismanaged by medical profession and government and is extremely unfavourable for people being inclined to voluntarily enter the field and submit serious applications as they are "welcomed" to do. Ending fatigue umbrellas, Tightening definitions (ending the Oxford CF clap trap ) & Ring-fencing could change this, MRC refuse , no one is challenging rhem on this as NIH are being, and are therefore continuing to fail people stricken with our potentially crippling illness.

£2m over many years makes headway in NO illness

Edit Mark above I realise has already said much of this, sorry

 

[Cinders66]

Regarding writing to MPs and ministers., my experience is that they are reluctant to intervene in medical decisions, it's seen as up to the medical funding bodies to decide how to allocate funds as they wish

 

[sarah darwins]

Regarding writing to MPs and ministers., my experience is that they are reluctant to intervene in medical decisions, it's seen as up to the medical funding bodies to decide how to allocate funds as they wish

It's true they seem to think everyone in a white coat is a visionary genius and are reluctant to get involved. But medicine is itself very political, and we've seen that with enough pressure exerted particular conditions do get more attention and more funding. At some point the balance will tip.

 

[Justin30]

Much of the Australian funding is private, though some comes from my state government. Our federal government does not appear to be doing much, like most countries.

Japan actually spends a lot from what I have read. Its probably number two in spending. Not all of it we get to hear about.

Wow i didnt realize Japan spent so much. Thats good.

What really needs to happen is that the world needs to step up to the plate as this has to be the largest hidden epedemic in modern history.

They cover it by calling a psychological disease when everything in biological literature says otherwise. Its absolute aweful.

 

[actup]

When you consider the populations of the UK(61.9m) and the US(307m) the US falls far behind.
2.1m pounds = approx 2.732m usd. So the US funds less than twice as much as the UK though our population is almost five times larger.To be equal w the UK the US would have to fund 5 x 2,732,000 usd which =13,660,000 usd. WOW!

 

[*GG*]

Hey, it's about half of what the US currently spends. I would take it, and build upon it.

Also, seems more than Canada will spend, not sure about Australia? Forget the rest of the world. LOL Where is the rest of the world on research actually? I know some research comes out of Japan, but leaves a hell of a lot of Countries out of the picture!

GG

My previous questions.

When you consider the populations of the UK(61.9m) and the US(307m) the US falls far behind.

2.1m pounds = approx 2.732m usd. So the US funds less than twice as much as the UK though our population is almost five times larger.To be equal w the UK the US would have to fund 5 x 2,732,000 usd which =13,660,000 usd. WOW!

Ah, that is what I was wondering. So seems the USA should do at least 15Million dollars a year.

GG

Edit: Oops, post below throw this off, by a lot

 

[Mark]

When you consider the populations of the UK(61.9m) and the US(307m) the US falls far behind.
2.1m pounds = approx 2.732m usd. So the US funds less than twice as much as the UK though our population is almost five times larger.To be equal w the UK the US would have to fund 5 x 2,732,000 usd which =13,660,000 usd. WOW!

Maybe you haven't read the whole thread but, as I think I've pointed out before (without having all the data on per annum spend), I think you are comparing what the UK spent in about a decade - £2.1m - with what the US spends per year. So divide your figure on what the equivalent US spend would be by about 10 - giving $1.366m - and you'd be getting closer to the comparison of annual spend. As far as I can determine, the £2.1m the UK has spent on biomedical ME/CFS research is a total from the last 5 years or so; before that nearly all the spend was on PACE, at average £850k per year, so £2.1m may not be far away from the total of all historical UK government spending on biomedical ME/CFS research.

 

[actup]

Oops! Don't want to get such an important figure wrong by 10 times. Sorry