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UK General Election Tomorrow: ME/CFS Thoughts?

Discussion in 'Action Alerts and Advocacy' started by Mark, May 5, 2010.

  1. Mark

    Mark Acting CEO

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    I haven't seen a thread on the election, sorry if there is one already. I thought it would be good to discuss what is in the interests of ME/CFS patients. I have seen an excellent letter from Nick Clegg, but I don't know what Conservative policy is. I presume Labour policy would continue as at present.

    If anybody has any more info I would be interested. I think all our friends, family and supporters should know what we think is best for us in this area, it might help them decide?

    Potential can of worms thus opened, I shall now step back and see what arises...should be interesting...
  2. V99

    V99 *****

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    Nick Clegg's comments were good, but need to be made publicly.

    Brown and Labour have been in power now for a while, so they wont want to be seen to have not acted on this issue. They may try brushing it aside.

    As for Cameron, guess it's the same as Clegg, who knows, but any new party will be able to start afresh with ME.

    Either way, they are in for a hell of a shock, what with XMRV on the horizon. Heads will roll.
  3. Sasha

    Sasha Fine, thank you

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    That sounds interesting, Mark - where is the letter? Can you provide a link to it, if it's on the net? Or give us the gist?

    I have been trying to think how it would be possible to use the occasion of the election to get ME further up the ladder. Whatever govt we end up with, it's going to be strapped for cash and there'll be huge cutbacks. I think that would be a good time to make the argument that spending a few million quid on biomedical research would net billions in tax from recovered patients who are back to work and who no longer need benefits. And in the all-change of MPs, perhaps we'll get some who have family members with ME who will be in parliament and well placed to fight for us.
  4. V99

    V99 *****

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    I should also say, even if you like Gordon, I doubt he will be in power in another years time. If we end up with a hung parliament, there is bound to be a leadership challenge.
  5. Mark

    Mark Acting CEO

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    The letter is on the Myhill thread somewhere (in two parts) I think, posted by Chris maybe? Or just search the forum for Nick Clegg. I have to go out now, but would love if somebody could find and post it in full, it blew my socks off! It looks perfect, and I doubt anybody else would be saying the same thing even if they wanted to tell you what you wanted to hear - how would they know? But those impressions do need to be confirmed...
  6. garcia

    garcia Aristocrat Extraordinaire

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    Both Labour and the Tories will let us down badly if elected. The only chance we have is with the Lib Dems. Nick Clegg's statement couldn't be more clear - he supports biomedical research.

    Also the Lib Dems will save money by scrapping trident (rather than scrapping benefits which desperately ill people need to survive on).

    It's too late to give ME a higher profile in this election. All we can do is vote, hope & pray that the Etonion toff Cameron doesn't get into office.

    My Vote is for Nick Clegg, the Lib Dems & biomedical research into ME.
  7. V99

    V99 *****

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    The cut backs, no matter who gets in, will be enormous. Therefore the right thing for them to do, would be to take funding from other diseases. Not a nice thought.

    Oh and scrap ID cards, 50% NHS managers & reduce their pay.
  8. garcia

    garcia Aristocrat Extraordinaire

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    Lib dems will scrap Trident and save billions. Plus they don't believe in ID cards.
  9. Sasha

    Sasha Fine, thank you

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    Thanks, Mark - Supporters of Dr Myhill posted as follows, but I don't know what his source was:

    There is a post of a letter from Nick Clegg MP who may have a position of some power in a few days time.​

    START QUOTE FROM NICK CLEGG MP LETTER​

    The Liberal Democrats have long argued that funding and research must be focused on the 'bio-medical' factors involved and not just simply managing the 'psychological' issues.​

    END QUOTE FROM NICK CLEGG MP LETTER​
  10. OverTheHills

    OverTheHills

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    Nick Clegg Letter

    Its from Feb 2008 and there is a copy of it on the MEAssoc website. http://www.meassociation.org.uk/ind...ader-writes-on-mecfs&catid=30:news&Itemid=161

    I don't know if I'm allowed to post it - I'm going to guess its OK and if not someone can tell me and I'll edit it out.

    In a letter to a constituent who lives in Sheffield, Liberal Democrat leader Nick Clegg MP criticises the NICE guidelines on ME/CFS and calls for the setting up of an independent scientific committee to oversee all ME research.



    The recently elected party leader (pictured) shows he is in listening mode following The ME Associations recent campaign asking members to write to their MPs backing calls for an adjournment debate on ME/CFS in the House of Commons.

    The call for an independent scientific committee echoes one of the recommendations made in November 2006 by the all-party Group for Scientific Research into ME, which under Ian Gibson MP conducted a lengthy inquiry into the state of ME research in the UK.

    Although John Bercow MP missed out in the ballot for an adjournment debate in November, The ME Association understands that he will try again soon.

    In the letter, Mr Clegg wrote:

    Dear Mr xxxxxx

    Thank you for your correspondence regarding some of the problems that are currently causing concerns for people with ME/CFS including inadequate research and the recent NICE guidelines on the subject.

    Unfortunately, a ballot to secure an adjournment debate on these issues, scheduled for the week commencing November 19, was unsuccessful.

    As Im sure you are aware, one of the main obstacles to the adequate treatment of ME is the lack of knowledge and consensus about the disease. There are many theories as to the causes of the disease but no conclusive proof to fully support any of them. This is why it is vital that more research is done into the causes and progression of this difficult to diagnose condition.

    What is not in doubt is the very real physical and psychological damage caused by this disease. The Liberal Democrats have long argued that funding and research must be focused on the bio-medical factors involved and not just simply managing the psychological issues.

    Whilst I welcome the fact that NICE conducted an investigation into ME/CFS, I do understand and empathise with the concerns raised about the findings. The recommendation that patients with ME/CFS be treated using an Activity Management Programme made up of Cognitive Behavioural Therapy and Graded Exercise Therapy does not follow the World Health Organisation guidelines which categorise ME as a neurological condition. In failing to recognise the bio-medical problems of ME sufferers, the NICE guidelines also fail to recognise the needs of ME sufferers.

    To help address the unique challenges posed by a complex and poorly defined condition like ME, the Liberal Democrats believe in the establishment of an independent scientific committee to oversee all aspects of ME research. We would also like to see the government and the Medical Research Council work with ME sufferers and biomedical researchers in order to achieve a proper understanding of the condition, challenge unjust perceptions and consider the issue of research funding.

    Whilst we welcome the establishing of local centres to focus on ME, we feel the NHS is still too centralised and too unresponsive to the needs of patients and families. We believe the special needs of those suffering conditions like ME can be better addressed by empowering patients and making the NHS more accountable at local level.

    Thank you again for taking the time to contact me about this issue.

    Yours sincerely

    Nick Clegg MP
  11. V99

    V99 *****

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    With that letter alone ever ME patient should vote lib dems, but looking at the polls, they are not going to get in. They may as a coallition though.
  12. Sasha

    Sasha Fine, thank you

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    Wow, that letter is great - I think I might have read it when it first came out on the MEA site but didn't pay much attention because the Lib Dems seemed like such no-hopers at the time (who knew?!). That's my vote sorted, then.

    This is great that that is actually party policy. I don't know how things would work in a coalition government but all we need are the right people on the right committees...
  13. Mark

    Mark Acting CEO

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    Has anybody out there, anywhere, met anybody who has met somebody who is not voting Lib Dem? Where the heck are all these other people? Out there in cloud-cuckoo land I suppose. Never managed to find a Tory in the Thatcher years either. Does make you wonder...

    Quite.

    My vote was sorted as well, but late in the day I saw this great letter and just thought: wow!

    My friend in the house confirms, and then some: Cameron is pure old-school tory slime, behind the scenes and in private. Often we have argued about it, because he even had me going for a while there! Just because he was saying important things that Labour had lost sight of. The "bigoted woman" thing was an accident waiting to happen, it has been the labour blind spot for years, IMO, if they had mates who are roofers or plumbers who can't find work they would know it's just a reality that there's a genuine issue there.

    But the Lib Dems, wow! I wish I had posted about this earlier: everyone in UK with understanding of ME/CFS should have seen that letter earlier. It just does definitively make your mind up, doesn't it?

    Simple case for us, really. Vote Lib Dem
  14. Esther12

    Esther12 Senior Member

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    It's a choice between the Conservatives and Labour for me:

    http://www.guardian.co.uk/politics/2010/may/05/election-2010-tactical-voting-guide

    On ME stuff, more Labour MPs have been supportive, but I doubt any of our politicians would really be willing to get involved in over-turning MRC decisions or anything. They've set up lots of systems to help them avoid responsibility, and I don't think any of them will want to change that. Looking at the likely results, I'd rather see one more Labour MP than one more Conservative, so I'm going Labour this time.
  15. Marco

    Marco Old blackguard

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    I can only add what I said on another thread :

    Until very recently, the Guardian newspaper was a Labour Party organ, reputed to have close links with the Wesselyites and the only national daily in the UK not to have published a story on the original WPI Science paper (it did of course publish stories on the European 'rebuttals'). It was also the paper that hosted the good old Dr Crippen blog.

    It was the Labour party who commissioned the economist and Labour life peer Lord Layard to produce the report which set out the cost/benefits rationale underpinning the FINE/PACE trials.

    It was a Labour minister who approved DWP funding for the FINE/PACE trials (as the only clinical trial ever funded by DWP, the decision to do so must have been made at ministerial level, believe me).

    It is the Labour party who have replaced Incapacity Benefit with the Employment Support Allowance (ESA) with the publicly stated intention of cutting the number of recipients. ME/CFS has been specifically targeted for attention. In doing so, they are now using a private sector firm to assess recipients for their ability to work with payment for results being based on declaring the patient fit for work and nothing else. The patients own GP's comments are now not considered relevant.


    I'm not aware that the Conservatives (Tories) have said anything specifically on ME, I suspect not. However, during the present campaign, David Cameron has stated that the ESA system of bonus payments merely for declaring people fit for work is iniquitous and, if in power, the Conservatives would ensure that bonus payments are only made once ESA recipients are considered capable of working, placed in a job and able to sustain that employment. I'm sure many would agree that this is a much fairer system vis a vis those with fluctuating illnesses!

    The rationale for voting for any particular party, with sole regard to the interests of us PWC's, is therefore not clear at all. From my perspective, if I was able to vote in the UK general election, the current Labour party is not the Labour party of old and I would ensure that my vote neither directly nor indirectly kept them in power.

    .... and whoever end up in power will be skint.
  16. Mark

    Mark Acting CEO

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    I didn't mean to imply that anyone could be expected to vote on this single issue. It's a shame we didn't manage to get something going campaigning wise in time for the election, but realistically nobody, even ourselves, is particularly likely to consider ME/CFS to be the biggest issue in the election.

    But what I did think was interesting was that from knowing what we know about ME/CFS, and knowing something of the party policies, tells us rather a lot about the integrity of the Lib Dems IMO - really just because Nick Clegg's letter is such a refreshing thing to see and shows that he clearly understands the issue. I was voting Lib Dem for these reasons anyway, but seeing what you suspected confirmed starkly in an issue you know and care about adds some weight to the decision, for me.

    Other than that quibble, Marco, thank you for that damning critique of the Labour policy record, really sets it all out nicely.

    The tactical voting issue...well, I'm an eternal optimist so I'm suspecting the Lib Dems will do rather better than expected in terms of both votes and seats - this is a pretty weird election in UK terms and I'm not sure the tactical side is as predictable as all that. It should be a long and exciting night!
  17. jace

    jace Off the fence

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    The thing that really scares me is a Conservative overall majority. In my constituency the Liberals were a poor third, and there were only a few votes between the Torys and the current Labour MP in 2005. My original intention was to vote tactically, to keep out the Conservatives. After all, I have spent time opening up a line of communication with the current MP.

    But I've changed my mind, and I'm not the only one. Everyone I know seems to have come to the same conclusion. After years of feeling that a Liberal vote would be wasted, and get exactly who we don't want elected to Government, now it feels important to vote with the heart.

    How silly if the best candidate (and round here the Liberal is the best candidate by far) failed to win the seat by a few votes, how gutting that would be. And should the majority round here disagree with me, well hey, at least I voted honestly.

    You may say that a large swing to the Liberals is impossible, but I disagree. At the grass roots that is how it feels, stranger things have happened electorally, in the past.

    I would also argue that Liberal politicians are less likely to be in it for the power and money - at least until they have become a real contender for a political season. After all, it was 1908 that they last were the Government.

    They have some excellent minds on the team these days too. /end electioneering statement :D
  18. V99

    V99 *****

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    I agree you should vote for who you want to win. Labour looked weak asking for tactical votes.
  19. Mark

    Mark Acting CEO

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    Quite so. I was amused by a TV discussion a few weeks ago, when they were discussing whether the Westminster village had missed a trick and didn't see the Lib Dem surge coming, had misunderstood the mood of the country. Can't remember details now but it was so stark, how out of touch with reality all of them were in that discussion. This has been coming for years and years. How many people now have only one reason left for not voting Lib Dem: tactical - it's perceived that they won't get in.

    I think tactical voting is an error. As if your constituency will be decided by one vote! I think you should vote for who you want to win, too, and your vote is still included in the overall percentage so that will still count for something in this election, in building pressure for something a bit more like democracy in this country. Without all those "wasted votes" over the last 20 years we wouldn't have reached this point in the first place. The overall result in terms of percentage vs seats is fairly likely to be a farce and an international embarrassment. Can you imagine if the largest party in vote share were the smallest in terms of seats? Laughing stock.

    I remember the Euro Election when the Greens came from nowhere to get 15% of the popular vote. In our house of 4, 2 of us did some Labour "knocking up" work during the day, one had a Lib Dem poster in his window, the other was a Tory. We all came home and discussed our votes, to discover to our surprise that we'd all voted Green and had made our minds up in the booth! Strange and unexpected things can happen when the people are on the march...opinion polls be damned!
  20. V99

    V99 *****

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    Perhaps after the election, we should get Nick Clegg to speak out, ask him to bring it to the media. Also ask him why he is not attending the 10th internatonal ME conference? Let's see if we can get him there.

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