ME/CFS Discussed in UK's House of Lords

Discussion in 'Fibromyalgia Main Forum' started by mezombie, Jun 3, 2008.

  1. mezombie

    mezombie Member


    Representatives from BRAME (Christine and Tanya Harrison) and The ME Association (Dr Charles Shepherd) were present 'Below the Bar' in the House of Lords on Monday 2 June to listen to a series of questions to Health Minister, Lord Darzi, on the subject of ME/CFS.

    There was a very good attendance, including some well known parliamentarians, from all sides of the House of Lords.

    Thanks to the Countess of Mar for initiating this mini debate and extracting from Lord Darzi a very clear statement about the government's position on the classification of ME/CFS, and to Baroness Howe for raising the issue of why the Royal College of General Practitioners are classifying CFS as a mental health disorder. The reply from Lord Darzi - 'I will encourage the Royal College of General Practitioners to look at the WHO classification, which, as I said earlier, is that it is a neurological rather than mental condition' - is very encouraging. For exchange of correspondence between MEA and RCGP on this issue see:

    A full transcript of the House of Lords Questions and Answers follows.

    Monday, 2 June 2008.

    The House met at half-past two: the LORD SPEAKER on the Woolsack.

    Prayers-Read by the Lord Bishop of Portsmouth.

    Introduction: Lord Mogg
    Lord Mogg-Sir John Frederick Mogg KCMG, having been created Baron Mogg, of Queen's Park in the County of East Sussex, for life, was introduced between the Lord Bassam of Brighton and the Lord Brittan of Spennithorne, and made the solemn affirmation.

    Health: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
    2.43 pm
    The Countess of Mar asked Her Majesty's Government:

    Whether the current NHS review will include consideration of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) as a long-term neurological condition.

    The Parliamentary Under-Secretary of State, Department of Health (Lord Darzi of Denham): My Lords, the Government recognise that CFS/ME is a poorly understood condition that can be very distressing to patients, their families and carers. The long-term conditions pathway is one of the care pathways that strategic health authorities are examining as part of the NHS next stage review. The review, which is being led by local multidisciplinary working groups, will increase awareness and ensure better care for people with CFS/ME and will help to support local delivery of the NSF for long-term neurological conditions.

    The Countess of Mar: My Lords, I thank the Minister for that reply. Does he appreciate that, despite the fact that it has been 40 years since the World Health Organisation recognised ME as a neurological disease and 20 years since the Department of Health did so, adults are still sectioned or deemed as lacking in capacity and children whose parents are blamed for their illness are put on the at-risk register or are made wards of court, with people from both these groups forcibly put into mental hospitals? This has been described to me as abuse by professionals. What has been the outcome of the CMO's 2002 recommendations on the £8.5 million supposedly spent on CFS/ME, which has apparently come to nothing, and what will happen in the future?

    Lord Darzi of Denham: My Lords, the Government accept the World Health Organisation's classification of CFS/ME as a neurological condition of an unknown cause. My ministerial colleague Ann Keen reaffirmed that position at the meeting of the All-Party Parliamentary Group on ME in January of this year. Subsequent to the CMO's report, the Government allocated funding of £8.5 million for two years, 2004-05 and 2005-06, to set up specialist CFS/ME services where none existed previously. These centres, of which there are 13 across the country, would improve services for those with CFS/ME.

    Baroness Tonge: My Lords, when I was a student, I had a professor who, when asked the cause of a very difficult disease, would usually reply, "Nobody knows, tiddly-pom". I suspect that ME falls into the "nobody knows" category. It is welcome news that pathways are being set up to look at this condition and to decide what is to be done in the health service, but how long will it be before the condition is taken seriously and protocols are in place to deal with the very real consequences for patients of this disease?

    Lord Darzi of Denham: My Lords, I thank the noble Baroness for acknowledging that for many years there has been a heated debate about CFS/ME among researchers, practitioners and patients. In fact, few illnesses have been discussed so extensively. The underlying issue is whether more research and development should be undertaken in this field not just on the symptomatology but on a diagnostic test so that we can at least plan different treatment protocols. In August 2007, NICE looked at the evidence relating to treatment protocols and recommended cognitive behavioural therapy and graded exercise therapy, as there was some evidence to support their suitability in the treatment of this condition.

    Lord Swinfen: My Lords, so far as I could hear, the Minister failed to respond to the noble Countess's point on patients with this disease being sectioned and children being put into care as a result. Would he be good enough to do so now?

    Lord Darzi of Denham: My Lords, I have acknowledged that CFS/ME is a neurological condition, but I am not aware of the circumstances in which associated illnesses might require sectioning. The noble Countess wrote to me about one specific case and I shall respond in relation to that.

    Baroness Howe of Idlicote: My Lords, can the Minister explain to the House why the Royal College of General Practitioners continues to insist on categorising CFS as a mental illness?

    Lord Darzi of Denham: My Lords, the Government have made it clear that they consider that CFS/ME should be classified as a neurological condition. It is for professional bodies to look at the evidence base and I will encourage the Royal College of General Practitioners to look at the WHO classification, which, as I said earlier, is that it is a neurological rather than a mental condition.

    Earl Howe: My Lords, is the Minister aware of the work of the charity Tymes Trust-I declare an interest as a patron-which specialises in supporting young people with ME, particularly with regard to their educational needs? Does he agree that recognition of CFS/ME by teachers, social workers and, indeed, GPs is of fundamental importance and that imaginative ways need to be found to help children with ME who cannot cope with mainstream schooling?

    Lord Darzi of Denham: My Lords, I am aware of the charitable contributions in this important area. In fact, many charities in this field have contributed to the development of NICE guidelines specifically in relation to children. I could not agree more with the noble Earl in emphasising the importance of engaging the family, the need for a diagnosis to be confirmed by a paediatrician and the need to support a return to education. These guidelines, which were issued as part of the NICE guidelines, have been welcomed by the Association of Young People with ME and provide a positive lever in improving services for children and young people with CFS/ME.

    Lord Elystan-Morgan: My Lords, is it not the case that under Section 31 of the Children Act 1989 a child can be placed in care only if he or she is suffering significant harm or is at risk of significant harm and that therefore any connection with ME can only be on the basis of a misdiagnosis?

    Lord Darzi of Denham: My Lords, I am very grateful for that intervention.


    Information posted by The ME Association


    [This Message was Edited on 06/03/2008]
  2. Rafiki

    Rafiki New Member

    and let him know how you feel.

    Remember, they work for you.

    Peace out,

  3. Rafiki

    Rafiki New Member

    How ya be?

    Just thought I'd let you know that something about they way the article was added has made the page veeeeerrrrrryyyy wwwwwwiiiiiiddddeeee (very wide) so that I had to copy and paste into another document to read.

    Thanks for posting.

    Since I was born in Middlesex, and even now live in a country with a parliamentary system, I feel I may comment that the whole thing reads as though it took place at Hogwarts!

    Peace out,
  4. mezombie

    mezombie Member

    Hogwarts, indeed!

    Anyhoo, thank for adding the info on how to comment on this.

    And I managed to fix the wiiiiiiiidth. I had no idea my message would post like that!

  5. Forebearance

    Forebearance Member

    Cool Zombie!!!! I am really happy for our UK members!

  6. Bluebottle

    Bluebottle New Member

    I've emailed him this:

    Dear Lord Darzi of Denham,

    Thank you for your comments about myalgic encephalomyelitis in the House of Lords on June 2nd. I have been severely affected & mainly housebound with M.E. for 20 years.In all that time the government have spent no money researching the physical causes of M.E.; all research money has gone to the psychiatric profession. Dr Gow and Dr Kerr, who are doing important studies of the genetics of M.E.,have both had their research applications turned down by the Medical research Council. They are struggling to find funding from tiny charities.

    As you confirm that the government accept the World Health organisation's classification of M.E. as a neurological illness, please can you tell me why only psychiatric research has received government funding? This is certainly not the case with other neurological illnesses such as M.S. and Parkinson's disease.

    The only treatments offered to M.E. sufferers are psychological - Graded Exercise therapy and Cognitive Behaviour Therapy, They are offered in clinics treating people with various conditions under the vague and meaningless umbrella term 'Chronic Fatigue Syndrome' without the patient first being given the available diagnostic tests for M.E. such as SPECT, MRI and PET scans, tests for NK cell and endocrine abnormalities, tilt table tests, viral tests etc.. It is alarming that people with M.E. are being encouraged to increase their activity level without tests of their heart function first being carried out, as research has proven that M.E. affects the cardiovascular system (in addition to the endocrine, immune, neurological and central nervous systems).

    The Canadian Criteria for M.E. (2003) states that the worsening of symptoms after exertion is a principal symptom of M.E., & that raised levels of noxious by-products of abnormal cell membrane metabolism, associated with exercise have been noted. M.E. patient group surveys have repeatedly found that CBT and GET make sufferers symptoms worse, and the 25% (severely affected) Group survey found that 83% had been made worse by GET and 93% by CBT. Some of the people in this survey had not been severely affected before graded exercise.

    Why then are we still being offered GET and CBT? Why are we being offered it as the only form of treatment for a physical illness? Why is M.E.the only physical illness that is being treated solely by psychological interventions? There are now thousands of research studies proving it to be a physical illness.

    Subsequent to Sophia Mirza's death from M.E.,following her forcible admission to a mental hospital (she was found at autopsy to have inflammation of her spinal cord indicative of herpes infection) it is alarming to read of other M.E. patients such as Jeannie Carson being forced to undertake CBT and GET to the detriment of their health.Ms Carson was left bed bound.
    ( How is this possible when the government accept that M.E. is a neurological illness?

    There are many effective treatments for M.E., such as targeted antivirals, and many more could be discovered if physical research were adequately funded. M.E. is a devastating illness from which few recover. The current situation of having a serious neurological illness that is erroneously treated by the medical profession as psychological is making the already difficult lives of M.E. sufferers an absolute nightmare.

    thank you for your attention,
  7. simpsons

    simpsons Member

    The countess of Mar is such a trooper we are so lucky to have her campaigning for us.

    i believe if we just keep on chipping away everyone keeps writing letters never letting them forget about us.

    Also i have posted that we have the one click group taking the dreaded nice guidelines to judicial review in the high court in london on the 17th june. so from every angle the pressure is on right now.
  8. Bluebottle

    Bluebottle New Member

    I've also emailed the Countess to thank her, she's patron of the UK 25% M.E. group (for the severely affected).
  9. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I was so glad to hear some good news from UK for my fellow CFSers.

    I was impressed that so many different individuals in the government knew so much. In US, I bet you couldn't find a handful that knows how the WHO classifies it. Even the guy answering the questions knew that, although he obviously didn't know the extent of the problems that have resulted from it.

    On another note, I find the British version of democracy very entertaining. We sometimes see the Q & A on C-Span. I don't understand what it means when they say "yeah" or what it means when they stand. I can't tell if that means support or disagreement. Not to mention the way they cut each other with sarcasm all the while being very gentlemanly with their courtesy titles and such. Giving a put down while making it sound like a compliment. Sure does make for better theater than a big room mostly empty with one person reading a statement and constantly asking for more time, while no one but the chairman is listening. This is what US Congress looks like when you watch C-Span.

    I think it funny that there is all this reference to the Queen's this or that, as though ya'll are still a monarchy. Yet your process seems more democratic than US. I would love to see Bush have to answer questions directed to him in a similar way. Well, come to think of it, strike that. It might make for good comedy, but might also be too sad.

  10. jasminetee

    jasminetee Member

    Thanks so much for posting this Mezombie. I've been wondering where the Countess Of Mar has been. I found older articles with her in them but nothing recently until now. She's been fighting for us for many years now at least. Even with all her fighting and knowing everything she needs to know and being super articulate etc... she hasn't been able to stem the tide of the UK adapting the Psychological stance for ME over these past few years.

    That's just incomprehensible to me considering she has laid it all our for them many times and she's even had patients with ME come in and testify and they did a great job etc... it's like the UK is just totally ignoring the truth that she lays out before them. I'm baffled by this. As others pointed out, they know the WHO definition and everything. They know how this affects us and they KNOW that it's truly physical so how is it that Wesseley can persuade them otherwise?

    Excellent letter Bluebottle!

    [This Message was Edited on 06/04/2008]
  11. Spinetti

    Spinetti New Member

    I hope Lord Darzi finds it as informative, clear, and persuasive as I did.

    Thanks for your efforts on our behalf,

  12. mezombie

    mezombie Member

    That was very persuasive. You are such a terrific advocate!

    Thanks also to Forbearance, Simpsons, Usedtobeperkytina, Frenchtulip, Teejkay, and Spinetti. It's good to read about some progress (even if it is agonizingly slow) every now and then, isn't it? At least Lord Darzi is on record now, and those of you in the UK can remind your MPs of this exchange.

    Simpsons, what happened to your thread on the judicial review of the UK NICE guidelines?

    [This Message was Edited on 06/04/2008]
  13. simpsons

    simpsons Member

    tired brain fog somehow i deleted it by mistake thank for pointing this out

    please would you be so kind as to repost your part of the press release?

    many thanks in advance


    you are funny we are still a constitutional monarchy the queen is head of state. They way they speak to each other is age old tradition and keeps them in order. yeah means yes and nay means no.

  14. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    ok, the only thing I find confusing is that the "yeahs" sound sarcastic sometimes, like "yeah, right"

    So can you tell me why they stand?

  15. tansy

    tansy New Member

    I have sent an email pointing out that children are still at great risk of being removed from their homes; so Lord Elystan-Morgan's assurances are sadly incorrect. A few years ago one UK based Immune Support member posted about what happened to her daughter; it was a chilling account.

    Great Ormond Street hospital had an inpatient programme (psychiatric ward) that was based upon the theory that the parents/family are responsible for ongoing illness/symptoms. These children were "treated" in a locked psychiatric ward; that's just about the worst possible environment for young people sick with ME.

    There's another children's hospital that runs a similar programme which has made children with ME worse; parents contacted their regional groups for help. Parents accounts of the treatment programmes at this hosptial, and what was said to them, were pretty harrowing too.

    Adults have reported members of the Wessely School blaming relatives or partners for encouraging their loved ones to maintain their sickness roles and secondary gains.

    The Countess of Mar has done stirling work on our behalves; so I agree with Bluebottle that we should thank her.

    tc, Tansy
    [This Message was Edited on 06/07/2008]