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An adjournment debate has been granted to Ian Swales MP (UK Parliament)

Discussion in 'General ME/CFS News' started by Bob, Jan 27, 2011.

  1. Bob

    Bob

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    According to Action for ME, an adjournment debate has been granted to Ian Swales, the Liberal Democrat MP for Redcar, in the UK's Parliament.

    The debate will take place in the Westminster Hall (not the main chamber) in the House of Commons at 4pm (4pm-4.30pm) on Wednesday, 2nd February.

    Adjournment debates are usually low-key discussions which take place at the end of the parliament day. The chamber is often totally empty, but I think that a minister has to be present to respond.

    I don't know how Adjournment Debates compare to Early Day Motions, in terms of usefulness.

    Here's the schedule for Westminster Hall, on the Parliament website (The debate starts at 4pm):
    http://services.parliament.uk/calendar/#/calendar/Commons/WestminsterHall/2011/2/2/events.html



    _________________________________________________

    Ian Swales tabled an Early Day Motion on M.E. last October. I haven't seen it before today, but it seems quite well informed:

  2. Bob

    Bob

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    Some other UK news...

    Quoted from today's Action for ME newsletter email:


    The Forward ME Group
    The Forward ME Group, convened by the Countess of Mar, met in London, 26 January. Keep an eye on the Group’s website for minutes containing advice from Dr Jane Rayner, Chief Medical Member of the tribunal service which hears welfare benefit appeals.


    APPG
    The All Party Parliamentary Group (APPG) on M.E. will meet, 1.30pm, Wednesday 16 February, Room W1, Westminster Hall to hear an address by Professor Stephen Holgate, Chair of the Medical Research Council (MRC) Expert group on M.E.


    NICE defers review decision
    The National Institute for Health and Clinical Excellence (NICE) has deferred its decision on whether or not it will update its guideline on CFS/M.E. until the findings of the PACE trial are published.

  3. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    I won't be happy until I see someone who's not a corporate sell out (*), demanding Wessely "et al" are brought up on charges of genocide, fraud, child abuse, false imprisonment, torture, abuse of position, and whatever else can be thrown at them
    and put on trial facing mandatory 30 years and confiscation of ALL goods & chattel

    (*) not saying this fellow is since h's trying to help it seems :)
    merely that many of them ARE, note how many like having boating cruises with Russian oligarchs, Murdoch etc, meh!
  4. Bob

    Bob

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    Yes, that would be nice, but some serious government funded biomedical research would be a good step in the right direction.
    Also, if you read Ian Swales' Early Day Motion (see quote), he asks for an independent committee of scientists to oversee ME research, which I think is exactly what we need, as long as it only has biomedical researchers on it.


    Silverblade, have you read any of The Countess of Mar's speeches in the House of Lords? She has been extremely scathing about Wessely, and hasn't minced her words... I'll try to dig a link out for you.

    Ah, here's the links. Sorry I can point you towards the most interesting bits right now, but it's worth reading the Countess of Mar's speeches...

    Countess of Mar speaking in the House of Lords about Simon Wessely. (Recommended reading!)
    (Controversy surrounding Simon Wessely and the psychological school of thought.)
    http://www.theyworkforyou.com/lords/?id=2002-04-16a.894.0&s=wessely speaker:12904#g894.1
    http://www.theyworkforyou.com/lords/?id=2004-01-22a.1180.2&s=wessely speaker:12904#g1180.3
    http://www.theyworkforyou.com/lords/?id=2006-12-07d.1248.6&s=wessely speaker:12904#g1280.2
  5. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    yeah I've read some of her stuff, hehe ;)
    see that's the advantage of an un-elected House: they can say more of what they believe, than just toe the damn party line :)

    we do need something very harsh, be it a serious outbreak of ME, wrongful death suit proven, or such, to slam a hard wedge in and "crack off" the slippery pseudo-science scum who've become imbedded in this field, from actual science.

    The UK is incredibly corrupt, our leaders moslty utterly incompetant, and nepotistic, only thing that's stopped it collapsing is a general desire by many to have governance by consent and helpful co-operation...even in the face of crazy bureacracy.

    there is simply too much vested interest, and guilt, for the Powers That Be, to actually do anything to help us, until *forced* to do so.
    last thing the spineless jellyfish in Parliament want is for them to be caught out at having been engaged in what's frankly, genocide by the backdoor by denying medicla treatment, which is a damn serious crime.
    hence the probable reasons for the secrecy on the MRC item and the DWP meeting (or DSS as it was then).

    cam you imagine what would happen if we had proof in writing that say some Minister approved a plan to "have this disease treated as a mental issue ot save the Treasury more welfare", or whatever reason they had for sweeping this under the carpet?
    The public would *crucify* them.
    And EVERY Minister who's had a hand in this issue in last 30 years has been at the very least negligent in letting this occur, or complicit. Thus, a massive desire to have this issue "go away"
    so, we poor sods have been getting it in the neck :/

    there are decent folk in Parliament, just as I've said here and elsehwere, ugly fact is, only about 1:8 people have the spine to speak up against the group or authority when a moral wrong is committed. Doe snot matter if Left or Right, religion or politics, too many people are cowards and let terrible things happen.
    "All it takes for Evil to flourish, is for good men to do nothing"

    This MP, seems to be the 1:8 with a spine :)
  6. Bob

    Bob

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    Does anyone happen to know if the LibDems are intending to follow through with their pre-election ME policies?
    Has anyone had any feedback from any LibDem MP's about their policy towards ME, since the election?
    I'd like to know if they intend to implement any of their proposals, such as their proposed independent scientific committee to oversee ME research funding.

    I've heard that Paul Burstow might be the minister attending the Adjournment debate. He is a LibDem, so it will be a LibDem MP asking a LibDem minister why the LibDem's pre-election policies on ME are not being implemented. Unfortunately, the LibDems don't seem to have a very good track record on pre-election promises!
  7. Enid

    Enid Senior Member

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    Thanks for posting Bob. Can't go through it all but gather the real voices are getting through now thanks to long and immense hard work on many fronts. Weasels out.
  8. cigana

    cigana Senior Member

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    We should check if the debate features on BBC Parliament (on iplayer) afterwards....I don't know of any other way to hear debates.
  9. Bob

    Bob

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  10. Bob

    Bob

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    I've checked the schedule for the BBC Parliament TV channel and the debate is not being shown on it, so it probably won't be put onto BBC iplayer either.


    But here's different ways you can watch the debate, either live or catch up...

    Live:

    Watch live on the Parliament website (At least, it looks like they stream live, but I've not used this service before, so it's untested!):
    http://www.parliamentlive.tv/Main/Live.aspx
    (Go to the correct date, 2nd Feb, and look in the 'Westminster Hall' section, and then click on the latest clickable link at, or above, the time of the debate.)


    Catch up:

    Catch up afterwards on the Parliament website:
    http://www.parliamentlive.tv/Main/Live.aspx
    (Go to the correct date, 2nd Feb, and look in the 'Westminster Hall' section, and click on the first clickable link at, or above, the time of the debate.)




    Other ways to watch the UK Parliament (for other events):

    Watch live on the BBC Democracy Live website:
    http://news.bbc.co.uk/democracylive/hi/bbc_parliament/default.stm

    Watch live on the BBC iplayer (watch the BBC Parliament TV channel live on BBC iplayer):
    http://www.bbc.co.uk/iplayer/tv/bbc_parliament/watchlive

    Watch live on TV on the BBC Parliament TV channel. See channel info here:
    http://news.bbc.co.uk/democracylive/hi/bbc_parliament/default.stm
    http://www.bbc.co.uk/parliament/programmes/schedules


    Catch up on the BBC Democracy Live website:
    http://news.bbc.co.uk/democracylive/hi/default.stm
    http://news.bbc.co.uk/democracylive/hi/schedule/index.stm

    Catch up on the BBC iplayer Parliament section:
    http://www.bbc.co.uk/iplayer/tv/bbc_parliament



    Timetables and Scheduling:

    Parliament website calender:
    http://services.parliament.uk/calendar/

    BBC Parliament TV channel schedule:
    http://www.bbc.co.uk/parliament/programmes/schedules

    BBC Democracy Live parliamentary schedule:
    http://news.bbc.co.uk/democracylive/hi/schedule/index.stm

    BBC iplayer schedule:
    http://www.bbc.co.uk/iplayer/tv/bbc_parliament
  11. cigana

    cigana Senior Member

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    Thanks for the extremely comprehensive reply, Bob (don't think there's any chance of missing it now)!
  12. Bob

    Bob

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    You welcome! It was handy to look up that information anyway. I didn't know that the Parliament website had a TV section.
  13. Sherby

    Sherby Sherby

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  14. Bob

    Bob

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  15. cigana

    cigana Senior Member

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  16. Bob

    Bob

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    I thought the MP did very well, considering the time available... He was definitely on the right path, and on our side, and saying the right things, even though he's clearly not an an expert on the subject, he had some good insight into the nature of the problems... I thought he was helpful including trying to separate ME from fatigue, but I don't think he was thrusting enough, unfortunately. I think he did a good job, considering that he was a lone voice. I might email him to thank him.

    The response was deeply depressing, in my opinion, with nothing new to offer.

    What did everyone else think?

    I wish I knew what the LibDems' policy on ME was, because they had a really helpful policy before they got elected. They wanted to set up a new independent committee of scientists to oversee research funding for ME. But i've not heard a peep about this policy since the election. I think it must have been dropped with the coalition agreement. Maybe we need to write to a few LibDem MP's to remind them of their pre-election policy. I'll add it to my list of things to do!
  17. cigana

    cigana Senior Member

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    You can email Mr Burstow on Paul.Burstow.2nd@parliament.uk. Here is what I sent him:



    Dear Mr Burstow,

    I watched your part in the recent adjournment debate on ME. You are probably already aware by now that ME is not classified as CFS/ME by the WHO, as you claimed. Rather than argue over the semantics, I would like to help you understand why something so seemingly benign as the name of the disease can have so much impact on the lives of those who suffer from it. Here is a based on real life story:

    There exists a neurological disease called ME, thought by some to be infectious, because it sometimes occurs in isolated outbreaks. Its long list of symptoms include pain, fatigue, dementia and depression.

    Now imagine if I were an academic psychiatrist and I took the rather bizarre step, you might think, of renaming ME as Depression. What might I stand to gain in doing such a thing? I could start by writing some papers on the theory that ME is actually just depression - after all, depression is a cardinal symptom, and many people who are depressed are also fatigued, so there are similarities and perhaps a psychological approach would prove helpful. If I could find a few like-minded psychiatrists we could each do this, and cite each others papers. A new research topic would be born.

    The government has decreed that the quality of science carried out by a researcher is measurable by the number of papers he/she writes. This would allow me to be perceived to be carrying out good science and my institution would be pleased - I might even earn a promotion to professor.

    As the momentum picks up, I could take it one step further and apply the well-known psychiatric techniques for treating depression to those suffering from ME. But surely, I hear you object, if ME is an infectious neurological disease, it could not be shown that psychological techniques are able to cure it?. Remember that I have renamed ME as depression. All I need do, then, is perform a study on a selection of depressed individuals and show that they respond positively. There is no onus on me to show that the selection contains patients who also qualify as having the original diagnosis of ME. I could then claim that psychological interventions successfully cure all patients with depression - including those that would have originally been given a ME diagnosis. This would guarantee success, so I could gleefully apply for research grants to perform the flawed studies. The Medical Research Council would be very happy, as psychological research would certainly be cheaper than biomedical research. The benefits agency and health ministry would be equally pleased. I might even be tempted to make more government departments pleased by also claiming that Repetitive Strain Injury and Gulf War Illness are figments of the imagination. The possibilities are endless and I rub my hands in greedy expectation.

    Wait. We are getting carried away. How could I argue that outbreaks in hundreds of people in localised communities have a psychological origin? Easy - I could simply claim that those outbreaks are merely examples of mass hysteria, a well documented phenomena.

    Meanwhile, elsewhere in the world, biomedical progress is made. The disease is partly understood and treatments are shown to be successful. Some are even cured.

    Surely you say, I would no longer able to maintain my assertion that the disease is psychological in origin. Surely there exists some sort of council which reviews the latest biomedical evidence and translates that into effective patient treatment? Such a council does exist and I chair it. Those who sit on it are psychiatrists who subscribe to my theory. Any room for a geneticist or endocrinologist? Why of course not - depression is a psychological disorder.

    I could point to the thousands of patients that have been cured of depression by my techniques. The public would be none the wiser that there exists a subset of patients who really have a neurological disease. Not even the cured patients themselves would be aware.

    But wouldnt my position be untenable given the mountain of biomedical data pointing to the physical origins of the disease? This is academia. Some are entitled to their opinion and I am entitled to mine - I need not quote or respond to any number of criticisms of my work, whether direct or indirect.

    And what about the press - surely someone in the press would certainly find out about the biomedical studies and report on them? Somebody in the UK press spends time reading and analysing the biomedical literature on ME? Of course they dont. They look to the Science Media Centre to decide which press releases to take note of in this area. I chair that too.

    What a wonderfully successful career I could have...





    So ME was lumped in, along with fatigue caused by depression, into a single disease known as Chronic Fatigue Syndrome and studied by psychiatrists with vested political and financial interests. Since then, people too sick to walk have been denied wheelchairs, as wheelchairs are said to be a psychological barrier to recovery. Perhaps we should do the same to people with Parkinsons disease - shall we call it Chronic Shakiness Syndrome and claim it is caused by worrying too much?

    People who have been ill for decades are not comforted by your recent speech on the subject because you offer no hope. The so-called biomedical areas of research the MRC claims to support are well known to us to be euphemisms for mind-body interactions. This happens every year, and there is no reason for anything to change this year because the same psychiatrists sit on the panel that awards grants.

    Should I be pleased that I can, if I wish, visit my local excellent (as you put it) specialist centre and look forward to a psychiatrist informing me that I suffer from the improper belief that I am ill? If these centres are so excellent, can I recommend that cancer patients no longer receive chemotherapy but are instead sent for behavioural therapy too? Until the name is changed and the psychiatrists with vested interests are no longer able to maintain their iron grip the pain, suffering and suicides will continue.

    I beg you to look deeper into the politics of this disease. On the 19th May there will be a talk at the Invest in ME Conference, a few minutes walk from Westminster, entitled Science, Politics and ME. I will be too ill to go, but I desperately hope that MPs like you will use that wonderful stuff we were all born with called energy and attend. A simple gesture like that would mean so much that it would no doubt bring tears to the eyes of many of the hundreds of thousands in the ME underclass.

    Yours sincerely,
  18. Bob

    Bob

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  19. ukme

    ukme Senior Member

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    cigana. What can I say? fantastic. Thanks for doing that x
  20. Bob

    Bob

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    Ciagna, thanks so much for that inspired piece of work...
    You've really nailed it, and summed up the complete picture of ME politics in one letter...
    It's a really great piece of work. Thank you.

    I found the minister's response really depressing. I really thought the new government might come with a fresh pair of eyes, but they're just repeating the same old tired government lines.
    I've had a bit of time off from writing letters recently, but i think i need to start again now that the new government has had time to settle in and get to know their departments.

    Personally, I think that the most important thing our community needs to push for now is for a separation of ME and other fatiguing illnesses. I think that all of our patient organisations need to get together and carry out a massive, concerted campaign to fight for the Canadian definitions, or better, to be used, so that ME can be treated as a single disease in its own right, rather than using the CFS umbrella term for diagnosis and research.
    I don't understand why all the separate charities haven't come together to do this already. To me, it seems to be the only way forwards for us.

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