Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
Discuss the article on the Forums.

House of Lords - Neurological Services Debate - 20 November 2012

Discussion in 'General ME/CFS News' started by Firestormm, Nov 21, 2012.

  1. Firestormm

    Firestormm

    Messages:
    5,022
    Likes:
    4,826
    Cornwall England
    I can't see this on Democracy Live unfortunately, so only have the Hansard Text link for now. The Countess of Mar fires a couple of broadsides although the answer from the Govt. health spokesperson doesn't address them directly. Possible of course we will hear about a written answer.

    Apologies in advance for the full text answer. I'd rather have listened to the debate. Reading this stuff is useful for quotes and context I suppose but such a pain in the arse! :)

    I suspect Bob will be sending a Xmas card (see bold) to Lady Mar this year!! :)

     
    Sasha likes this.
  2. In Vitro Infidelium

    In Vitro Infidelium Guest

    Messages:
    646
    Likes:
    280
    Mar's 8 minutes didn't warrant even an acknowledgement from Northover - I wish she (Mar) didn't suffer so badly from Hooper's Disease - it needs a deftly wielded scalpel to expose the Government flesh - not a sandbag.

    IVI
     
    justy likes this.
  3. Firestormm

    Firestormm

    Messages:
    5,022
    Likes:
    4,826
    Cornwall England
    Methinks (well methinks with difficulty at the moment :)) but methinks that without Lady Mar in da House ;) we wouldn't get ME on any agenda. And more relevant to debates like this, we could risk losing our tentative association with other neurological conditions - in political debate at least.

    That's not to say I don't concur with the Hooper-disease sentiment (having re-read the comment above and figured out what was meant :)).

    Now. Let us all link-hands and celebrate the finding of the above debate by Fire on Democracy Live. Don't all feint at my technical ability this morning - although I may well do :)


    http://news.bbc.co.uk/democracylive/hi/house_of_lords/newsid_9770000/9770956.stm
     
  4. In Vitro Infidelium

    In Vitro Infidelium Guest

    Messages:
    646
    Likes:
    280
    You are quite right - though that doesn't exactly fill me with confidence. Given an Elected Upper House is drifting ever into the future, there's definitely a need to recruit the interest of one of the current appointees.

    For thse who don't want to watch the whole thing, Mar comes in at 47 minutes. Maggie Wheeler follows directly from Mar and is worth listening to for details of how grim things actually are. Wheeler also thanks a number of advocacy orgs for their contribution - no mention of any M.E/CFS orgs !? Missed opportunity ?

     
  5. Firestormm

    Firestormm

    Messages:
    5,022
    Likes:
    4,826
    Cornwall England
    I listened to most of it earlier. Need to listen to the rest tomorrow. There were some good contributions to the debate that will affect those with ME from the perspective of maintaining the link to neurology - if what is being asked for (from memory) care plans, centrally accountable neurological commissioner, local neurology commissioners (and other stuff I will note later).

    To be honest, I've been involved (in a limited way) with 'neurology' and the neurological alliance and locally with other neurology advocates - and - well - as was said several times in this debate - I'm kind of fed-up banging me head against the wall.

    The debate from 2 years ago for example (http://news.bbc.co.uk/democracylive/hi/house_of_lords/newsid_9080000/9080032.stm) referred to in the one the other day - raised issues that STILL have not been addressed.

    There has been repeated acknowledgement of the problems by government, health service and commissioners - but nobody seems to have done anything about them.

    There has been 'progress'. Neurology will be recognised as a separate entity by one of the central commissions now, but the e.g. National Service Framework for Long term conditions (read Neurological Conditions) which recognised ME - published in 2005 - highlighted all the 'failings' in health and social care - and here we are in 2012.

    Talk about frustrating. 8-10 million people with a neuro condition. High levels mind of misdiagnosis across the board - high levels of ignorance - in fact if you listen to this mini-debate you will hear how you can align ME with many if not all other neurological conditions.

    Whatever you think is 'wrong' about health and social care for ME - is wrong for other conditions too: including a lack of treatment and understanding. My perspective has ever been one of maintaining the link of ME with other conditions in order that 'we' i.e. 8 million of us together might actually make better progress (10 million including Migraine from memory).

    All of the things IVI you have said recently (that I have agreed with) about for example how ME isn't terminal, how 'we' don't get enough of a profile in terms of 'brand recognition', how we don't 'appeal' to public sympathy etc. well other conditions DO.

    Aligning ourselves and maintaining this connection - can only do 'us' good. Long-term and short. With local GP commissioners 'we' must maintain the recognition that ME should be placed alongside other long term conditions and that long term conditions need unique treatment and service commissioning...

    Ran out of steam. Back later :)
     
    alex3619 likes this.
  6. Quilp

    Quilp Senior Member

    Messages:
    211
    Likes:
    506
    Will someone help Firestormm with his penchant for banging his head against walls, before his limited way with 'neurology' becomes, well, even more limited :)
     
    Enid likes this.
  7. maryb

    maryb iherb code TAK122

    Messages:
    3,512
    Likes:
    3,096
    UK
    Thanks for the link fire however you said,

    'All of the things IVI you have said recently (that I have agreed with) about for example how ME isn't terminal'
    I really have to disagree most strongly with both of you on that one. Maybe not for us(yet) but for some it has been and will continue to be for others.
     
    Enid likes this.
  8. Firestormm

    Firestormm

    Messages:
    5,022
    Likes:
    4,826
    Cornwall England
    Mary. ME is not recognised as being a 'terminal condition'. When compared to for example Motor Neurone Disease which - from the debate above - will result in death within less that 18 months (if my memory serves), ME is not terminal.

    If ME were terminal then people with ME would (small compensation) have a much easier time with for example benefits and social care - or at least that is the (incorrect) assumption of many I suspect.

    If ME were terminal the 'public image' might generate more empathy. I say 'might' because Motor Neurone Disease remains (as you would have garnered from the debate) very poorly treated overall. However, if ME were terminal, with the prevalence figures our condition engenders there would I expect be a rather more considerable outcry.

    In terms of the very few deaths that have had ME or CFS recorded on death certificates world-wide, our condition is not recognised as a terminal disease.

    Debilitating? Most definitely. Hell, even NICE recognise that:

    As you will have heard in the debate above, MND doesn't even have a NICE Guideline, doesn't have the kind of resourcing that one might expect from a terminal condition. The kind of resourcing that some people would think should be automatically apply to a terminal condition.

    The whole point of the debate was - to me - that even such condition as MND are under-resourced, under-recognised and leave patients without the degree of care and support that even the most ardent Daily Mail reader would expect.

    In previous threads we had been discussing what is wrong with ME advocacy. You have to remember that there are diseases out there that even come under the category of Neurology, for which there is a distinct lack of support about which there is more knowledge.

    Until such time as someone is better able to decide what it is that's happening in terms of disease causation and progression in people who have a diagnosis of ME - until that aetiology is agreed and better diagnostic measure are brought in to play - even after all that occurs - we will still not see the gates open and things improve. Not if the experiences of those others with condition like MND are anything to go by.
     
  9. maryb

    maryb iherb code TAK122

    Messages:
    3,512
    Likes:
    3,096
    UK
    'In terms of the very few deaths that have had ME or CFS recorded on death certificates world-wide, our condition is not recognised as a terminal disease'

    Sorry fire statistics don't mean anything to me, in my simple world ME can be a terminal illness, I'm not debating, too unwell for that, pre-ME I would have enjoyed it, but thats just how I see it now. I understand that opinions put simply like this can irritate people who want to and are capable of greater debate so I'll leave it there.
     
    Shell and Enid like this.
  10. Firestormm

    Firestormm

    Messages:
    5,022
    Likes:
    4,826
    Cornwall England
    It isn't an irritation Mary.
     
  11. alex3619

    alex3619 Senior Member

    Messages:
    12,523
    Likes:
    35,227
    Logan, Queensland, Australia
    Firestormm, I have long agreed that we need to broaden our collaboration and include other neuroimmune diseases at least, and probably a much wider range of diseases. Many of these diseases including Lyme Disease receive insufficient attention, and the barriers and problems are very similar to what we face. Dealing with these problems with more unity can only be a good thing. So I am happy that you are making connections with neurological diseases groups and advocates. We need more of that. I will have much more to say on this in time, but my blogs relating to this are not ready yet.
     
  12. Firestormm

    Firestormm

    Messages:
    5,022
    Likes:
    4,826
    Cornwall England
    One of the problems is though Alex, that whilst we perceive our care and treatment to be 'bad' and treatment and care for other neurologically categorised conditions to be 'better' - they often aren't. Involvement of the voluntary sector is as essential for care in this 'climate' for conditions such as MS (from personal experience) as they are for ME (in my reluctant opinion).

    With great anger - I am coming to the reluctant conclusion that unless 'we' do something about care and treatment ourselves - or become more engaged with those who attempt to and are part of the NHS - then things will simply not improve to the degree that as patients, carers and family members - we deem essential.

    We can't go it alone. In my opinion we need to maintain this link, to join-up with other neurological conditions, and, where we can, form joint working partnerships with NHS (and even private (though centrally funded perhaps), providers of healthcare. There are many common symptoms that are treated similarly across this broad spectrum, that involve the same healthcare professionals.

    Look, I am limited by my condition, first to admit it (though perhaps not enough some times), and the notion I was working on a one point, was a 'neurological centre' catering to all. It would be a MAMMOTH undertaking, delivered locally - it couldn't be across the nation. There have been some centres already established (one in .... hell I can't remember... up north somewhere) - but it won't be something that the NHS get behind on their own.

    It will need to be driven by like-minded individuals who are capable of seeking the funding and willing to work WITH the NHS and Dept. of Health and all the bureaucracy in-between.

    Seeking voluntary commitment and involvement because the NHS and Government fail is something absolutely abhorrent to me. But I don't think we will have a choice. We simply will NOT be able to dictate 'terms' however - it is essentially (for part-funding alone) and for the provision of healthcare professionals - as well as for e.g. data-collection at source (see e.g. debate above and my previous references to this) - that we work together and not seek 'quick-fixes' based on the loudest opinion.

    Having said that - my opinion seems to be loudest on this thread ;)
     
  13. In Vitro Infidelium

    In Vitro Infidelium Guest

    Messages:
    646
    Likes:
    280
    One of the effects of 'austerity politics' is the production of a progressive 'schizophrenia' on the part of the politicians, where endless intitiatives are announced but where there is no money to support the change. The Government's view is that efficency will produce more for (even) less with no recognition that change involves cost. Apart from Wheeler's (somewhat oblique) comments no one in the parliamentary debate got to grips with the harsh reality, that more resources for Neurology means (at least in the short term) less resources for other areas of medicine. Without someone in Government with the 'spine' (irony intended) to actually carve out more money for Neurology, not only will there be another 7 years with little change, but with no new resources the question has to be asked - why would neurology want to accept the M.E/CFS burden given that psychiatry has been so ready to have M.E/CFS on its lists ? If we wat M.E/CFS treated as though it is primarily 'neurological' (no argument surely ?) then enhacing neurology as whole has to be a key objective for M.E/CFS advocacy
    I suppose we have to be cautious in that this discussion is specific to the UK – but within that limited context at least, the co-operative approach has significant implications for how advocacy is conducted. Not only are there the inherent concerns about quality of communication with the audience – but sensitivity to the positions of partner organisations/groups is essential. No organisation is going to maintain co-operation with a bunch of (perceived to be) ‘crazies', whose agenda is opaque and whose activities lack credibility with the common objective audiences.

    M.E/CFS advocacy probably has a long way to go in demonstrating to potential partners, that it is a serious participant in wider health advocacy. Reports of harassment and an ill focused dispute with a whole area of medicine might well raise concern with those organisations which have established track records of consistent engagement with the target audiences. Having already established a less than productive relationship with mental health advocacy, failure to properly engage with the greater body of Neurological advocacy, could leave M.E/CFS as the Millwall of UK health advocacy.

    How this plays out in other countries/cultures needs specific discussion. But if the focus is on decisions taken at Westminster, or by the NHS bureaucracy or the local commissioning boards (in England) or the respective commissioning structures in N.I, Scotland and Wales, then the specific circumstances must be taken into account. Reliance on some ‘globalised’ notion of advocacy would lead to inevitable failure.

    IVI
     
    Firestormm likes this.
  14. Firestormm

    Firestormm

    Messages:
    5,022
    Likes:
    4,826
    Cornwall England
    Further to my last. These were discussed on BBC Today's programme this morning. If they are able to be extended to cover healthcare - or indeed if a healthcare initiative could embrace wider social concerns in some way - then they might be a means of additional funding opportunity. Note also that such things are being actively considered by the Americans too:

    Sorry. Probably takes us on a whole new debate. Will be listening to the remaining part of the House of Lords debate later today I hope. Will post some extracts if I get round to it :)
     
  15. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    859
    UK
    There are people like the Countess of Mar trying their very best for real recognition of ME - that is the point. The Lords will take longer.
     

See more popular forum discussions.

Share This Page