1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Phoenix Rising Adds Two New Board Members
Mark Berry introduces the new President of Phoenix Rising, Dr. Gary Solomon, and welcomes Professor Jonathan Edwards to the Phoenix Rising Board of Directors.
Discuss the article on the Forums.

UK: House of Lords: Countess of Mar asks real reason for ME blood ban, 8 Nov

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Sasha, Nov 8, 2010.

  1. Bob

    Bob

    Messages:
    8,073
    Likes:
    10,349
    England, UK
    Yes, I like that too! I could get used to a name like that!

    And of course we'd also have to have "The Countess pictureofhealth"... it's an eye catching name! I like it! :D

    (I just hope that the other Lords and Ladies in the House of Lords will understand the irony of the name!)
  2. Sasha

    Sasha Fine, thank you

    Messages:
    8,062
    Likes:
    6,865
    UK
    Beats a puppy from the dogs' home!
  3. Sasha

    Sasha Fine, thank you

    Messages:
    8,062
    Likes:
    6,865
    UK
    I like it! Hope we get ermine gowns!
  4. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    Messages:
    534
    Likes:
    1
    Europe
    Enid - so sorry didn't mean to leave you out of the role call of honours! - how does ' Duchess Enid of Kent' sound to you?

    And they can keep the ermine as long as we get an ME policy change for the better. (Note to self: Must remember to send mink stole to dry cleaners ..oops sorry, I mean't furriers ..) Power and (faux) fur is only good if it means we can do great things with the privilege!
  5. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    506
    Los Angeles, CA
    No such titles in America, I'll just have to settle for the title I awarded myself long ago - Empress of the Universe.
  6. Yogi

    Yogi

    Messages:
    66
    Likes:
    47
    Earl Howe

    Earl Howe made a very good statement on 22 Jan 2004.
    However I am not as impressed with his recent XMRV statement.

    It is possible he could be helpful to the cause as he has been sympathetic at least in the past.

    http://www.publications.parliament.uk/pa/ld200304/ldhansrd/vo040122/text/40122-13.htm



    Earl Howe: My Lords, this is an unusually difficult debate for non-medical parliamentarians such as myself, who come cold or nearly cold to what is, by any standards, a highly technical subject. However much background reading I may do on the clinical character of ME—I have done a good deal—I am aware that it does not qualify me in any way to pontificate on those matters and certainly not to pronounce on the essentially aetiological issues underlying the noble Countess's Question. The noble Countess, on the other hand, is in a quite different position, as she is of course steeped in the subject. She deserves to be listened to with particular care; and it is not surprising that I should find myself impressed by what she has said today.

    In trying to summarise her concerns, I hope that it is not too colourful to say that we are looking at a doctors' battleground; for it is apparent that, for some years, there has been a sharp division of opinion in the world medical community about what ME actually is. Since 1969, as the noble Countess said, ME has been formally classified by the WHO in its international classification of diseases as a neurological disorder—in other words, an organically based condition, albeit with psychiatric components. To others, it is first and foremost a psychiatric or behavioural diagnosis, albeit with a range of physical symptoms that are psychosomatic in origin. I hope that that is not too simple a way of describing the essential difference of view.

    It is a difference, as we have heard, that has profound implications. For legal and medico-administrative purposes, the formal classification of a disease determines who treats the patient and how—in other words, whether one is referred to a psychiatrist or to another specialist such as a neurologist. If ME is an organic, physical illness, a psychiatrically oriented response, particularly one focusing on cognitive behavioural therapy, might not, to a layman, appear to get to the root of the difficulty, although I take note of everything that the noble Lord, Lord Turnberg, said in that context.

    22 Jan 2004 : Column 1192

    The WHO guide to primary care is one of the key sources of guidance for English-speaking doctors in general practice. That is why it was with surprise that patient groups noted a couple of years ago that the guide and its associated web guide appeared to take a stance completely opposite to the official WHO line, classifying ME under the heading of "Mental and Behavioural Disorders". The diagnostic criteria for ME as listed in the guide were totally inconsistent with the internationally accepted criteria, omitting to mention numerous biological abnormalities and placing undue emphasis on lifestyle factors. How were such inconsistencies to be explained? It turned out that that part of the WHO guide had been compiled by the Institute of Psychiatry at King's College Hospital, London, and the Department of Psychiatry at Oxford University, where a number of the proponents of the "psychiatric abnormality" school of ME are based. In September 2001, the WHO issued a statement effectively repudiating the classification of ME in the WHO guide and on the website.

    When I was in the Ministry of Defence, I heard nothing but good about Professor Simon Wessely, and it is no purpose of mine to make his position difficult. I take no pleasure in, and set no store by, the suggestion that Professor Wessely effectively hijacked the WHO logo to give credence to his own view of ME as a mental illness. Nevertheless, I am uncomfortable that the professor does not appear to be doing his utmost to clear the air on this issue.

    The noble Lord, Lord Turnberg, was kind enough to give me some papers that defend Professor Wessely's position, the tenor of which he reflected in his speech. I have to say that I did not find those papers as useful as I had hoped. While making clear that the professor does indeed regard ME as a real condition—I accept, of course, that he does—they not only gloss over many of his numerous published pronouncements but also skirt around the key issue of what he regards the nature of ME as being. That is important because of the very considerable influence exercised over government policymaking by those who believe that ME is an inherently mental illness.

    If in the UK not enough emphasis is being placed on the WHO definition, it is likely that research on ME, which everyone agrees is vitally necessary, may be wrongly balanced. I should be interested to hear from the Minister how much research is being directed to the possible neurological and physical causes of ME as opposed to other possible causes.

    There are other consequences too. If the UK, for some reason, departs from the long established WHO line, there is an obvious potential impact on disability benefits. I understand that, at present, the mobility component of DLA is not available to physically incapacitated individuals diagnosed with ME. It would be helpful to hear from the Minister why that is.

    I am concerned, too, that if the definition of ME as a mental disability gains further ground, there will be profound implications in the context of the reform of the Mental Health Act. The Government's original proposals included a power to enable doctors to

    22 Jan 2004 : Column 1193

    impose compulsory treatment orders on adults and children.
    I have considerable difficulty with the concept of compulsory treatment orders in any case, without the thought that they might capture those who should not be classified as being mentally ill in the first place.
    Reputable doctors of my acquaintance will say that in treating a patient with ME, the best approach by far is a holistic one, involving mind and body, in which the patient feels that the doctor has a real empathy for him and that all his concerns are being taken seriously. But that is far from being the universal experience. There is a risk of my being too anecdotal, but I have read numerous accounts of patients who have presented to their doctor with the debilitating and distressing physical symptoms that are ascribed to ME, and who have been told, in essence, that the symptoms are psychosomatic and that they should stop making a fuss and go home. Once we get onto that kind of territory we are on a dangerously slippery slope.

    I have a particular concern for children with ME. A child presents with symptoms consistent with ME and is classified not as having an illness with an organic cause, but as being mentally disturbed. So the question is asked: what is making him mentally disturbed? All too often, the answer is that it is the parents; that is, that a parent is in some way inducing the symptoms in the child. If a parent is inducing them, the cause is clear. What is behind it is Munchausen syndrome by proxy—that ill-founded diagnosis which is so flimsy yet so powerful and which, as recent criminal cases have shown, has been instrumental in bringing about desperate travesties of justice for mothers and families. So instead of asking how the child should be treated, the question becomes: is the child safe to be left with the parent? Should care proceedings be considered? That is a train of thought that in general practice and social services is far from uncommon; and all because children who are genuinely physically ill are classified as though they are not.

    Those are the issues that we have to confront. I hope that the Minister will do so head on and that in his characteristically thorough way he will take away with him the many important questions raised in this debate and ensure that they are followed up with a proper reappraisal of this distressing and complex condition, and the guidance that is given on it. What matters is that patients with ME are treated appropriately and well. In turn, that depends on clarity from academics and evidence-based treatment guidelines. It is clear from this debate that we have some way to go before that point is reached.
  7. Sasha

    Sasha Fine, thank you

    Messages:
    8,062
    Likes:
    6,865
    UK
    Hi Yogi and welcome to the forums! You're storming in there with some really good info. I'm really surprised to read about Lord Howe giving Prof Wessely a hard time on his position - I hadn't realised anyone in govt had been aware of what was going on with him.
  8. Bob

    Bob

    Messages:
    8,073
    Likes:
    10,349
    England, UK
    Thanks for that Yogi... I hadn't read that before...
    What an intelligent, insightful and helpful speech...
    And what a shame he can't work for us full time!

    I think it must be this chap, a Conservative peer and front-bench member of the House of Lords, Frederick Curzon, otherwise known as Earl Howe, or Lord Howe;

    http://www.parliament.uk/biographies/frederick-curzon/26696
    http://wapedia.mobi/en/Frederick_Curzon,_7th_Earl_Howe
    http://www.theyworkforyou.com/peer/earl_howe
    http://www.conservatives.com/People/Peers/Howe_Frederick.aspx
  9. Yogi

    Yogi

    Messages:
    66
    Likes:
    47
    Parliamentary Under Secretary of State (Department of Health)

    Hello Sasha. Thank you for your warm welcome.

    This is an excellent forum - thanks to Cort for setting it up. I have been reading some of the posts for a while and getting up to speed with things. I just thought it is about time to start contributing!!!!!

    With the exception of the Countess of Mar, Earl Howe is the only parliamentarian who I had come across that didn't speak in riddles and whose speech was intelligible regarding ME/CFS. He is aware of the key issues concerning those with ME/CFS.

    I just put this post up as it may be a good idea for those who are politically active to engage in some dialogue with this Parliamentary Under Secretary of State of Health. Along with the new Coalition it appears he is new to the position as Conservative member so he maybe more open-minded and helpful unlike the last lot (but wouldn't hold my breath)!!
  10. Yogi

    Yogi

    Messages:
    66
    Likes:
    47
    Hi Bob - Your welcome!

    Please see my response to Sasha. It is a good opportunity for anyone in the ME community who has a good MP or asks questions at parliament to use this opportunity . Personally I don't understand as much about the workings of the House of Lords compared to the House of Commons.
  11. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    Messages:
    534
    Likes:
    1
    Europe
    Hear hear the excellent Earl Howe!! Thank you & welcome Yogi! How did you find this?

    I am sure that Professor Hooper might like to read this and/or be reminded of it again - if any one reading is in direct contact with Prof H?

    This is such a rare gem of a speech.
  12. Bob

    Bob

    Messages:
    8,073
    Likes:
    10,349
    England, UK
    Well, this is a very interesting development...
    Apparently, just like Yogi says, Earl Howe is currently the Parliamentary Under Secretary of State at the Department of Health...
    I don't know exactly what that means, but it means that he's part of the government, and he is a minister in the Department of Health, and it must mean that he has direct contact with the Secretary of State for Health.

    Oh, here's some info about his position from Wikipedia:
    Yogi, the Lords and Ladies don't have any constituents because they don't get elected... The good thing about that is that they don't get many people writing to them, so any letters that we send might receive more attention than they would from an MP... I've written to some members of the House of Lords in the past and each of them have always engaged with me really positively.

    Unfortunately, although the people I've written to have been very sympathetic, they were all backbenchers, and so were able to effect very little influence.
    But Earl Howe might be a different matter, as he is actually a minister in the Department of Health.
    So I think it might be worth writing to him... especially as he seems to totally 'get' the subject, and to have a really excellent grasp of the issues... He seems to have summed up the issues perfectly in his speech.

    I think it might be worth pointing out to him what's going on at the MRC, and about Simon Wessely's continuous influence on the government regarding policy towards ME and research funding.
    I feel a letter coming on.

    Earl Howe's parliamentary contact details are here, in case anyone wants them:
    http://www.parliament.uk/biographies/frederick-curzon/26696
  13. Mark

    Mark Acting CEO

    Messages:
    4,527
    Likes:
    2,004
    Sofa, UK
    Thanks for highlighting that Yogi - any more gems like that will be more than welcome! Is that the best ever parliamentary speech on ME/CFS I wonder? Definitely a contact worth cultivating and informing. Providing Earl Howe with well-sourced information and well-reasoned arguments sounds like a great idea.
  14. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,795
    Likes:
    521
    UK

    ...and if you write to Earl Howe, he is very likely to refer your email on to the DoH for a response.

    I wrote to Earl Howe, in July, in his capacity as a Patron to The Young ME Sufferers Trust (the Countess of Mar and Lord Tim Clement-Jones are also Patrons to TYMES Trust). Lord Clement-Jones failed to reply. I had written to all three with my concerns about the Bath/Bristol pilot study in children.

    Although I had stated that I was writing to Earl Howe in his capacity as a Patron to a children's ME charity, Earl Howe passed my email and attachments on to a Matthew Harpur at DoH, without making any enquiries about the basis on which he was being approached or whether I was happy for my email and attachments to be forwarded to the Department of Health.

    Mr Harpur passed my email onto Bill Davidson, Research Governance Manager, Department of Health.


    Mr Davidson responded on behalf of Earl Howe thus:

    Thank you for your e-mail of 16th July to the Parliamentary Under-Secretary of State for Quality regarding a research project involving the "Lightning Process" in 8- to 18-year-olds with myalgic encephalomyelitis. Earl Howe has asked me to reply.

    You are quite right that new treatments should be compared with current standards to see which is better. You are also right that this comparison should be made in appropriate participant groups.

    New treatments are not generally tried out first in children before there is evidence of their safety and efficacy in adults, but sometimes it is appropriate to do so. It is a matter for a research ethics committee to be assured that the evidence supports the extension of the new treatment to children.

    We require the decisions of research ethics committees to be independent and free from bias and particular stakeholder interests. It would therefore be inappropriate to have a mechanism through which particular stakeholders might seek to affect a research ethics committee's decision. We require research ethics committees that become aware of a possible breach of good practice in research to inform the relevant authorities so that they can take appropriate action.

    Our National Research Ethics Service publishes lay summaries of the research approved by research ethics committees. It is normal practice for researchers also to put details of interventional studies on an open-access register, before the first participant is recruited, unless there is very good reason for delaying disclosure.

    I note that the outcome of the research ethics committee review of the proposal for this project has not yet been reached. I expect it will, in accordance with Department of Health policy, come to a decision that takes account of all the ethical issues, including the appropriateness of the proposed participant group.


    Had I wanted Mr Davidson to respond to my concerns, I would have written to him directly.

    Please note that I had not said that "new treatments" or the Lightning Process, specifically, should "be compared with current standards to see which is better." Nor had I said that a comparison of Lightning Process "should be made in appropriate participant groups." I had not called for Lightning Process to be tested in any patient cohort, adult or children.

    When the Countess of Mar tabled a Written Question on ethical approval of Lightning Process pilot study in children aged 12 to 18, the response was provided by Earl Howe, Parliamentary Under Secretary of State (Quality).

    You can read his response, here: http://wp.me/p5foE-3cj

    Suzy
  15. Wildcat

    Wildcat Senior Member

    Messages:
    719
    Likes:
    796
    Tabled on 21 October and due for answer by 4 November.

    House of Lords Written Question

    http://www.theyworkforyou.com/wrans/?id=2010-10-28a.311.3&s=speaker:12904

    The Countess of Mar (Crossbench)

    To ask Her Majesty’s Government what assessment they have made of whether the decision by the South-West Research Ethics Committee to approve a pilot research study into the effects of the Lightning Process on children is consistent with the ethical guidance issued by the Medical Research Council to the effect that clinical trials should only include children where the relevant knowledge cannot be obtained by research on adults, and that research involving adults cannot provide the same benefits.



    House of Lords Written Answer

    Hansard source (Citation: HL Deb, 28 October 2010, c311W)

    Earl Howe (Parliamentary Under Secretary of State (Quality), Health; Conservative)

    Research ethics committees’ decisions are expected to be impartial and independent of ministerial and other influences. The Government do not interfere with their deliberations, either while they are in progress or by reviewing the outcome. The practice of research ethics committees is subject to training, accreditation and other quality assurance by the arm’s-length National Research Ethics Service to ensure the competence and consistency of their decision-making.

    It would be unethical if scientists did not seek to determine the safety and efficacy of treatments and care for all intended beneficiaries, male and female, young and old. When considering whether the particular sample of people proposed as research participants is appropriate, research ethics committees have regard to the established ethical principles reflected in the medicines for Human Use (Clinical Trials) Regulations 2004, international and professional codes of practice and guidelines from funding bodies such as the Medical Research Council (MRC), although the research project in question is neither a drug trial nor funded by the MRC.'





    Hmm, no joy from the DOH the on the ethical implications of the LP trial, then. Sounds more like pass the parcel. Goodness knows who briefs them on Lightning. The Health Minister from the old government (Mike O'Brien) wrongly thought that LP was a form of CBT to help with living with ME symptoms, and was all for it, to the extent of dismissing the views of a CFS clinic clinical lead who had said specifically that LP doesn't help people who are ill, only those who are not ill.
    Again, who on earth briefs them?
  16. Bob

    Bob

    Messages:
    8,073
    Likes:
    10,349
    England, UK
    Yes, I noticed that minister say that LP is a form of CBT... it was last year at the APPG meeting, wasn't it?
    I was quite surprised how he'd been totally misinformed about that, as well.
    He said something like "oh, I happen to know about quite a lot about this subject"... and then went on to say LP is a form of CBT.

    Unfortunately, I think that the DoH does specifically use Simon Wessely as a source of advice for ME. So, what happens, is that you write a letter complaining about the influence that psychiatrists have in the running of the MRC, and in relation to policies surrounding ME generally, and then the DoH give your letter to their psychiatrist advisor, Simon Wessely, to respond to, and then he tells them that there's nothing to worry about and that the letter-writer, or the MP, or the Lord or Lady, is misinformed... And then you get a reply stating what the psychiatrist has told the minister... That's always what happens to my letters anyway.

    I just wish that one of us could make a breakthrough one day, and actually get the ear of the health secretary or a health minister. They've been so deaf to all of our concerns for so many years, and yet so many intelligent people have been making the case for ME to receive funding and to be taken seriously. It's really quite astounding how so many people can be so successfully ignored over the course of so many years.
  17. Bob

    Bob

    Messages:
    8,073
    Likes:
    10,349
    England, UK
    oh well, i was optimistic, for about 24 hours, that we had someone new and effective on our side!

    I've had that happen to me as well, with a member of the House of Lords... It's a breech of privacy, isn't it... I think that some of these Lords and Ladies maybe slightly out of touch with normal social behaviour sometimes!
  18. Yogi

    Yogi

    Messages:
    66
    Likes:
    47
    Thanks for all the comments and in particular a big thanks to Suzy @ ME Agenda for her update (although a very disappointing post)

    It really is disheartening to see how Earl Howe could make such a good speech and be so acquainted with all the key issues when not in government in 2004 and then when being fortunate enough to become Parliamentary Under Secretary of State at the Department of Health (and finally be able to do something) give yet another meaningless and useless response.

    I just don't understand this ???????
  19. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    Messages:
    534
    Likes:
    1
    Europe
    Unless the full contents of the UK ME documents requested under the FOI Act, but currently languishing in Kew have anything to do with it ..

    We seem to be caught up in a constant circular guessing game in the UK.
  20. Bob

    Bob

    Messages:
    8,073
    Likes:
    10,349
    England, UK
    I don't know what the correct MRC research funding figure is, for year 2009/10, but the 100k figure has been quoted more than once now... It would be interesting to find out if this is the correct figure or not...

See more popular forum discussions.

Share This Page