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Invest In Me 2013 conference speakers announced

Discussion in 'General ME/CFS News' started by justy, Jan 23, 2013.

  1. Firestormm

    Firestormm Guest

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    Yep. I'd go along with that :)
     
    justy likes this.
  2. Marco

    Marco Old blackguard

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    The sooner she loses the chair of the RCGP the better.
     
    ukxmrv likes this.
  3. Sasha

    Sasha Fine, thank you

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    I don't think it's to our advantage to have people who hold the psych view being insulated from biomedical scientists who can educate them and challenge their beliefs. The more dialogue the better.
     
    alex3619, barbc56, SOC and 1 other person like this.
  4. In Vitro Infidelium

    In Vitro Infidelium Guest

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    From an M.E/CFs perspective that may - or may not be true (devil you know and all that). Gerada is serving a three year term, and can (I believe) seek re-election. It is generally a bad idea for advocacy groups to be seen being overly concerned with the internal democracy of an organisation to which those same advocacy groups have interest in extending influence. The voting members of the organisation are very likely to exercise support contrary the expressed interest of the advocacy groups - merely as a demonstration of independence. For now Dr Gerada represents the RCGP and M.E/CFs advocacy has to take that on the chin and deal with it in ways that extend influence where that is possible. The alternative is not advocacy, but bunker philosophy.

    IVI
     
    barbc56 likes this.
  5. Marco

    Marco Old blackguard

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    I believe that you misunderstood the reason for my sentiment. B**gger all to do with advocacy or ME/CFS (directly) and more to do with the fact that every time I've seen her interviewed on the current NHS reforms she has been overly negative and obstructive to the point that she was eventually excluded from talks.

    In fact, rather in the same fashion that you yourself have suggested that some linked with ME/CFS advocacy have effectively excluded themselves from meaningful engagement with those in a position of influence.

    I do hope her input to discussions at the conference is relevant and constructive and not used as a platform to 'beat the drum' on behalf of her glorified trade union.
     
  6. In Vitro Infidelium

    In Vitro Infidelium Guest

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    As far a snide goes - that's quite witty. But where does that leave any potential relationship between M.E/CFS advocacy and the RCGP ? It's all very well for those outside the UK to urge a conflictual realtionship - you are insulated from the long term effects of a negative relationship. The RCGP is the foremost representative of General Practitioner professional standing in the UK. Identifying a patient group with insults against an elected member of the RCGP's leadership team doesn't have a mere academic effect, it has the potential for real world impacts upon how GPs view patients who fit into that group.
    And these are indeed issues that can be reasonably challenged -but insult and deprication isn't necessary, indeed the whole appeal to ad hominem fallacy can be easily avoided because these are organisational issues, directly linked to the RCGP. One can argue purely from the perspective of the relationship between patient and GP, and the desirable role of the RCGP in being cognisant of patient views of psychiatric models of the illness. This actually an area whre patients (at least in England) currently have additional purchase because the new commissioning rules envisage reference to patient demand.

    It would be foolish to believe that some massive reversal is going to happen, but (at least within phlegmatic British institutions) change requires sustained engagement. Dr Gerda may not be the RCGP leader who will influence the RCGP to adopt a radical new aproach to M.E/CFS ( although organisations can allowing surprising things to happen), but her successor or their successor may provide the conditions for a notable change. However that will only be possible if M.E/CFS advocacy (conducted by whatever organisations) continues engagement with the RCGP over years, we can't wait until someone gets elected who is a 'perfect fit' - we have to deal with whoever is there now, whenever 'now' is.

    IVI
     
    barbc56 likes this.
  7. Research 1st

    Research 1st

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    There's a strong presence of Bad Science that needs to be corrected, because unknown to many people including patients many years ago CFS/ME was accepted by the UK as a neurological illness. Thus there is no 'debate' if CFS ME is psychological or not. It cannot be so, or the classification wouldn't exist.


    On that basis, then perpetuating the myth of CFS ME, as a psychological impairment must cease. Psychiatrists should certainly apologize unreservedly for the denial of neurological ME and CFS, that Dr Gerada appears to engage in. No wonder Dr Montoya thinks so too and made a point of saying the medical profession needs to apologise. It does.

    Any attending Psychiatrists to the IVIME 2013 conference should listen carefully to Professor Mella's presentation where he can demonstrate a novel ability to offer significant improvement in people with CFS by administering B Cell depletion therapy, with results that far outweighs the success of the wasteful 'PACE' trial.

    The NHS has been superseded by what the NHS encouraged, ''expert patients''. Expert ME patients have flourished, people who now know far more than their GP's about the biomedical nature of their disease ME and CFS, by following CFS research outside of the UK where oligarchic control of state (NHS) medical care provision doesn't exist, as there is no state medicine to control everyone.

    Expert ME CFS patients outside of America know that America and (if funded) Norway leads the way in CFS research, whilst the British chaotically flounder with Dickensian rhyme that is used extensively for 'CFS' for cost benefit reasons, rather than scientific. Remember that bizarre talk on 'Mind - Body Dualism' to explain away the potentially fatal CFS/ME? That really is a demonstration of functional somatic syndrome in action!

    A very low NK function (researched by Dr Nancy Klimas) in people labelled with CFS/ME worse than people who are HIV+, is proof of an underlying immune suppression. This defect causes ME CFS patients to be frequently infected with viruses, which in turn causes disabling organic fatigue. ME CFS is thus not a 'post viral' syndrome, it is a persistent viral fatigue syndrome, in patients with this defect. No one know who has this defect, as patients are not tested and instead, neglected and ignored ushered into the arms of 'I believe you' liason psychiatry.

    In addition to NK phenomena, reduced immunity in ME CFS is also evidenced by measuring IgG subclasses. (An immunological fault than can also occur in CFS/ME). IgG subclasses were told not to be tested for by Wessely.
    What a strange coincidence. A coincidence, of course.

    Away from depressed, chronically fatigued cohorts of oxford cfs criteria studied at Kings College, CFS/ME is a form of acquired immuno deficiency syndrome, a non HIV-AIDS. To ignore this science fact, would be against the very ethos of what it means to be a doctor and practice medicine. Yet this is the situation, and inept psychiatrists rule the roost.

    Whatever Dr Gerada's reasons are for attending it would be refreshing to see an opportunity for her to engage with science and thus saving ME CFS patients lives with biomedical treatments rather than playing a victim or one on others behalves.

    The real victims of the ME global tragedy are individuals too physically weak to stand up and leave their bedrooms, women unable to conceive and start a family (a fundamental human right), people bed ridden and housebound living in unbearable pain and distress, and the deceased. Yes I had to mention them, because deceased ME CFS patients with those acronyms written on their death certificates are real thorn in the sides of people who want to pretend this whole 'thing' never happened.

    The deceased are the most ignored, because by a strange set of coincidences (through the use of the SMC) the UK press never seem to be able to report in national newspapers about ME patients actually dying of what they are told is imagined. The same goes goes for GWS and chronic lyme disease.

    The ME global tragedy encompasses a suffering foolishly caused by state denial of new onset chronic neuroinflammatory disease that was first recognized by the W.H.O in 1969, and rubber stamped by the CDC in 1989 after multiple outbreaks of intractable severely fatiguing new onset neurological illness in children, professionals (nurses and doctors) and others. Some of these outbreaks were associated to the administration of vaccines. Vaccines to this day are known to trigger CFS ME.


    Maybe Dr Gerada can tell us that she will personally lobby for the psychiatric molestation of science to end and UK ME patients to be allowed default access to:

    1)
    Brain scans to detect hypoperfusion in people with CFS. Thus enabling evidence of brain vascular impairment.
    NOT PSYCHOLOGICAL.

    2)
    A TILT Test (As Dr Julia Newton wants in the updated NICE guidelines) to diagnose POTS, thus detecting neurological dysfunction in people with CFS.
    NOT PSYCHOLOGICAL.

    3)
    Anti viral drugs through monitoring of secondary infections in the community with a community nurse.
    NOT PSYCHOLOGICAL, Immunological.


    If this is not possible because science is to be continued to be ignored, then perhaps Dr Gerada can personally lobby
    the Royal Colleges for a removal of the UK's:

    Blood ban for pregnant women who develop CFS whilst they are pregnant.
    Blood ban for CFS and ME and PVFS.
    Tissue ban for CFS and ME and PVFS.
    Deceased tissue ban for PVFS.

    The above bans would be unecessary if CFS ME is a mental and behavioral illness and not one that potentially harbors infectious pathogens such as prions, viruses and retroviruses.

    Be removing the bans, this would finally confirm to the public and the medical profession that CFS is indeed a psychological impairment safely treated with CBT and exercise therapy, and a dose of pacing.As is the claim in all Department of Health literature distributed to medical professionals and the public alike. This is something the Royal Colleges should be discussing and debating actively. Why aren't they?

    To not do that would be a travesty for the patients and would raise ETHICAL questions on how someone can be told they have a neurological illness by the UK Department of Health, but be simultaneously treated as having a psychological illness by the NHS, who are part of the Department of Health.

    I have no idea who has been sitting on the ETHICS committee for so long, and I am sure there is
    no conflict of interest at all.

    The Royal Colleges shouldn't ignore such a dreadful state of affairs where ME CFS patients are being systematically been lied to (by concealment of the truth on infectious risk to others) and worse still, being advised to undertake non evidence based (science based) treatments that neurological ME and CFS patients themselves have reported makes them WORSE, or PERMANENTLY WORSE!

    Lets hope something good comes of this all, however past history tell us it will not.
     
    sianrecovery, justy and Min like this.
  8. In Vitro Infidelium

    In Vitro Infidelium Guest

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    No I hadn't understood that was what you meant. Interestingly what you present as criticism would I'm sure establish common cause with some M.E/CFS perspecitves on the NHS reforms. In any case I would have thought that aspect of Gerada's exercise of her role would actually have won her additional support amongst the RCGP membership, and (if she wanted it and is allowed to stand again) would likely secure her a second term.
    The multiple and confusing roles of all the individual Royal Colleges (of medicine) is a difficulty - in the case of GP's not just a Trade Union, but, because GPs are in private practice, it's also a Trade Assocition, as well as having the professional development role. As for Gerada's position I would imagine 'beating the drum' goes with the territory - it does mean though there's an expectation of sympathy for the 'rhythm' and a possible opportunity for quid pro quo concessions and exchanges of 'furs for muskets'.

    IVI
     
  9. Shell

    Shell Senior Member

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    I hope that she will be challenged to produce some good solid empirical science ...:rolleyes::D
    Other than that I hope the conference does well. God knows we need a break. I would like them to look at why we can't even get some of the basic tests done here.You know things like Lymes tests, lupus, blood sedimentation, mito or mast cell, magnesium levels, EBV reactivation, all the unspellable ones as well??
    All the most expensive well managed and wonderful research in the world is pointless if we can't even access the tests.
     
  10. Enid

    Enid Senior Member

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    I've an awful feeling whatever she learns she will never seek to exclude psychiatry (or whatever). Bit like lambs lieing down with tigers here.
     
  11. Marco

    Marco Old blackguard

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    How depressing! I would have expected most ME/CFS patients to have welcomed the opportunity for greater flexibility from their GP practice rather than the continuation of the current cookie cutter approach by central diktat?
     
  12. Enid

    Enid Senior Member

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    If she does indeed accept the science, the known and understood pathologies, investigations needed etc. into general practice UK then one may say she has done ( a long and overdue) best. As is expected from all in the medical profession.... and anyone else for that matter. Iime have tried their utmost over years to engage medicine UK - may this bring greater understanding and better treatment from them all.
     
  13. Firestormm

    Firestormm Guest

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    I wouldn't - to be fair - expect too much. Her attendance and giving (us and her) a fair hearing is a start. Progress needs to be made but I wouldn't start adding performance expectations. I just hope the audience affords her the benefit of any doubt for the duration. This could easily go 'tits-up' to coin a Brit-phrase :)
     
    barbc56 likes this.
  14. lnester7

    lnester7 Seven

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    Here is a question. Do you feel comfortable saying to a person in Chemo "Well you can control throwing up after treatment just don't think about it and don't do it" Avoid smells that trigger it.....

    Or a IBS patient say " Hey don't go to the bathroom, You can avoid to $it so much if you don't go, just hold it in!!!"
    or A MS patient "Well you know, just don't try to stand up so you don't fall!!!"

    I think telling us to avoid activity is as much as an insult. Moving is part of one functioning and live, The whole world is designed with some mobility in mind or for you to have help if you can't move.

    GOSH this is really a sore point for me. And no I don't have a point.
    Rant Over.
     
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  15. vli

    vli

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    No u did hv a point inester and i'd say it was a very good one. vli
     
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  16. In Vitro Infidelium

    In Vitro Infidelium Guest

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    It's a question of whether one believes that the 'opportunity for greater flexibility', actually exists and whether patients have any power to have actual influence over the what is provided under the NHS in England. From my reading of what is going on, there are four areas which raise major scepticism.

    1. Although the commissioning agencies are being restructured, the requirements upon thm are little changed from those applied to the current agencies i.e - different people are being asked to do the same thing with the same (or less) money.

    2. The intermediate tier of administration, although also restructured, is basically going to be comprised of the same people doing the same things with the same remit, with same (or less) financial allocation.

    3. While the new commissioning agencies in theory have the ability to innovate; demographics, service structure, contract duration, and the fact that a whole raft of services have been made manadatorially awardable to private contract irrespective of the quality of inhouse delivery, will all contribute to limiting what the new commissioners can do.

    4. There is no inherent capacity for patients to influence new service direction, particularly there is a potentially profound democratic deficit, where motivated and articulate communities, (typically those where the health burdens are below average) will have a disproportionate influence upon regional provision.

    A few areas may well see progress in providing (within the NICE Guidelines) new/better services for M.E/CFS patients, on balance though I would see M.E/CFS actually becoming of reduced focus in the NHS in England. The biggest opportunity for M.E/CFS provision, at least on paper, is for private sector provision of CBT/GET services which the local Commissioners may not be able to refuse funding.

    IVI
     
  17. Marco

    Marco Old blackguard

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    I'm sure you are much more familiar with the incoming changes and the current and likely structural dynamics than I am.

    Wishful thinking perhaps that with devolved budgeting and commissioning/purchasing GP practices might find they and their patients getting better 'bang for their buck' from providing symptomatic relief rather than commissioning 'liaison psychiatry' services.
     
  18. snowathlete

    snowathlete

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    Personally I can't see that ever happening. It may signal a shift in views, but i still worry that it might be a mistake.
     
  19. peggy-sue

    peggy-sue

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    Does anybody know if Gerada was on the MRC committee, at any time, and was she involved in ensuring the Wessely school got funding at the expense of biomedical research?

    After all, it was in the remitt of the MRC to award all research funding. I have certainly been under the impression that she was involved in this.. (I may be wrong. I would like to know, though.)
     
    Shell likes this.
  20. Shell

    Shell Senior Member

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    That's a good question peggy-sue and I'd like the answer to it as well - the truthful answer.
     

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