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UTV: Northern Ireland: More sufferers plea for help (features Dr Enlander)

Discussion in 'General ME/CFS News' started by Firestormm, Feb 22, 2012.

  1. Firestormm

    Firestormm Guest

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  2. allyb

    allyb Senior Member

    Thanks firestormm, an inspirational start to my day,



    :victory:Go Northern Ireland.........:victory:a little country with a big voice, shouting loudly, I do hope they are heard. When the health minister is not available, they shame him by his absence and seek out Dr Enlander to put things into perspective.

    Shame they think the UK has more to offer, it really hasnt and a bigger Psychiatric influence, which leading by example will be partly responsible for why Ireland is so poorly served.


    They have asked for facebook twitter responses, I hope they get a massive thank you from all corners of the globe. They could our lead.;)
    allyb
  3. Marco

    Marco Old blackguard

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    As an integral part of the UK allyb the NI authorities have no choice but to comply with the NICE guidelines.

    I don't know what provision is like now but there was one hospital based doctor specialising in ME/CFS who has now closed the clinic and a 'Chronic Fatigue' clinic that merely screened for other exclusionary fatiguing illness (like cancer, diabetes, heart disease etc) and then discharged patients with a diagnosis of ME/CFS.
  4. allyb

    allyb Senior Member

    Yes Marco it is indeed very limited for ME/CFS

    People who have influence........influence NICE and NICE have influence in the NOT so NICE way that some are treated.:rolleyes:

    Kindest regards
    allyb
  5. Firestormm

    Firestormm Guest

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    [video=youtube;B_Ii9QUagV4]http://www.youtube.com/watch?v=B_Ii9QUagV4[/video]

    I didn't think this one was particularly strong, but it's more exposure and that can't be bad can it? Dr Enlander is in Northern Ireland next month for a talk and meeting with Forward ME in the House of Lords on the 6th March I believe.

    Will type it up later in case I missed something...
  6. Nielk

    Nielk

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    [video]http://www.u.tv/utvplayer/everywhere/player.aspx?vidid=142609&chapid=116927&arti_id=e0e07bd3-c5e8-4f0c-811b-5756a3ccd4c0&clientid=100000[/video]

    I posted this on a different thread.
  7. Firestormm

    Firestormm Guest

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    Oh Sorry Nielk. I didn't see it. I did look (this time). Nuts! Shall I request a merger?
  8. Nielk

    Nielk

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    Whatever you think is best. I just re-posted it here so I think it's fine.
  9. Abha

    Abha Abha

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    Hi Nielk,
    If one clicks on your link this comes up
    404 - File or directory not found.
    The resource you are looking for might have been removed, had its name changed, or is temporarily unavailable.
  10. Nielk

    Nielk

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    Thanks Abha. I just fixed it so hopefully it should work.
  11. Daffodil

    Daffodil Senior Member

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    years ago, dr. enlander wrote the queen in hopes of getting help for suffering CFS patients. he is one of the royal family's doctors. i dont think the queen did anything.

    SHAME. SHAME ON ALL OF THEM.
  12. Nielk

    Nielk

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    You are right Daffodil - shame on all of them!
    Yet, I do see a glimmer of hope for the future with the Countess of Mar and Dr. Enlander is trying to reach out again by going over and speaking to the House of Lords.
  13. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    The Queen cannot ever interfere in politics
    just for those who don't get it, UK is a constitutional monarchy
    queen would trigger a constitutional crisis if she got involved in political issues (she's like a "last line" safety valve in governance, not a "string puller")

    You want someone to help, write to Prince Charles, guy is grossly under rated, does sh*t ton of good you won't hear about, and his Mum staying on the throne let's him piss off slack-arsed politicians all day :p
  14. Vitalic

    Vitalic Senior Member

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    Prince Charles is a blithering nutcase. This is the person who wants homeopathy state funded by the national health service and congratulated homeopaths trying to treat African AIDS victims with their contentless sugar pills. Underrated my arse, although I'm sure he'll recommend you some nice alternative quack medicine for your ME symptoms, if you ask nicely enough.
  15. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    ah huh
    and who keeps spinning these lines about him?
    why, the tabloid media!
    Why?
    think about it a loooong minute before replying ;)

    he HAS done a vast amount more than you realize, he just doesn't hype it.
    By nature I'm against entitled elite, but, he has earned my respect.

    as for homeopathy, well it does work better than a lot of conventional systems
    why? Placebo/caring/hands on tends to help lot more than iffy drugs and indifference
    Not saying I believe in the concept of homeopathy, I see no evidence for that working, but the practice/cutlure/experience helps patients, animal or human
    and at least you know it can't bloody poison them! :p
    Thus, homeopathy has done more for ME patients in the UK than conventional medicne which hasn't done just bugger all, it's actively got in the way of treatign patients and literally abused them
    So, I suggest you are being too quick ;)
    go read up on the man's actual help and achievements.

    and in Africa, how do you expect governments their to pay for those drug regimes?
    when south africans, rightly, said "FU!" and produced their own cloned drugs oh how the pharma corps cried!
    Patents, copyright, IP, means of control and blackmail, with drugs it's extortion via threat of murder: pay up or die
    anywya, the West has lost the war for the control of Africa's resources, CHina's moving in, will sweep away the ignorant witchdoctors AND evangelical extremist nutcases who're getting in way of saner governance and health care.
    Chinese are true, low-key, zero tolerance but smart, pragmatists. they learned from our mistakes
  16. drjohn

    drjohn Senior Member

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    Letter, Re: I still believe in a cure for my son (Belfast News Letter, 23 February 2012)

    PERMISSION TO FORWARD AND RE-POST ON OTHER FORUMS, SOCIAL NETWORKING SITES AND USE IN NEWSLETTERS. PLEASE TWEET AND RE-TWEET ON TWITTER.

    Letters to Belfast News Letter.

    Before one can hope for a cure (I still believe in a cure for my son, Belfast News Letter, 23 February 2012 -- http://www.newsletter.co.uk/lifestyle/features/i_still_believe_in_a_cure_for_my_son_1_3550493), or a treatment which brings significant recovery from M.E. (Myalgic Encephalomyelitis), it is first necessary to diagnose M.E. as a discrete illness, quite separate from any other single condition which may be subsumed under the indiscriminate collective term Chronic Fatigue Syndrome (CFS),and/or to stop regarding M.E. as synonymous with the whole CFS bundle which, astonishingly, is the norm worldwide.

    There isn't a universally agreed diagnostic test for M.E., such as a blood test or scan but to impose any treatment that was tested on people who do not have some of the cardinal symptoms of M.E. - for example, Post Exertion Relapse, that is, a delayed effect of 24-48 hours after quite minuscule effort, often unwitnessed, as well as a kind of dizziness, POTS (Postural Orthostatic Tachycardia Syndrome) and/or Orthostatic Intolerance, that is difficulty in standing upright - on M.E. sufferers, who have a quite different profile, is logically untenable, scientifically invalid and unreliable, as well as, given the anecdotal evidence of patient deterioration and research proof that Cognitive Behaviour Therapy (CBT) is ineffective without relapse and Graded Exercise Therapy (GET) makes a majority worse, morally reprehensible.

    M.E. sufferers are better off with no treatment at all - apart from that from a sympathetic GP, for any particular symptom relief, such as pain or sleep disturbance - including those offered in NHS clinics, than one which is disappointingly ineffective and certainly one that may set them back. And this is before the charlatans, purveying alternative and radical techniques, which rely upon belief, get their hands on you and your wallet.

    Money spent on the unproven and potentially dangerous cart of treatment would be more intelligently spent on the horse of biomedical treatment, to discover the cause of what we are dealing with here, instead of taking unwarranted risks with patient's health and lives.

    Yours sincerely
    drjohngreensmith@mecommunitytrust.org
    Dr John H Greensmith
    ME Community Trust.org
  17. Firestormm

    Firestormm Guest

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    Packed Belfast meeting greets Dr Derek Enlander and launches new Northern Ireland Alliance: http://www.meassociation.org.uk/?p=10673

    by Tony Britton on March 7, 2012

    One of the largest gatherings of people with M.E. and their carers seen in the UK for many years gathered in Belfast last Thursday (May 1) for a medical lecture by New York physician Dr Derek Enlander and to launch the new ME Alliance Northern Ireland (MEANI)

    The main conference room in the Lansdowne Hotel on the Antrim Road was jam packed as about 400 people tuned up from every corner of the Province.

    They listened intently as Dr Enlander, an Ulsterman born and bred, talked about his clinical practice and research with ME/CFS patients at the Mount Sinai Hospital in New York. Among the crowd and an honoured guest was Jim Wells, Democratic Unionist Assemblyman for South Down and designate Health Minister for Northern Ireland.

    The meeting was organised by Joan McParland, chairwoman of Newry and Mourne ME/FMS Support Group, who said afterwards: I had 277 bookings for places not on the night over 400 people turned up. Every seat in the hotel was carried into the conference room and there were still people standing at the back of the room.

    The numbers were way above health and safety limits but thankfully the hotel didnt turn anyone away!

    Dr Enlander who engaged with his audience in a Question and Answer session chaired by Dr William Weir, an infectious diseases consultant based in central London travelled to Antrim the following day for an M.E. workshop held by the Health and Social Care Board. This discussed possible ways forward for the development of a comprehensive NHS service for ME/CFS in Northern Ireland.

    The Belfast meeting put the final seal on the formation of the ME Alliance Northern Ireland, which its determined to push hard on the agenda for better ME/CFS services throughout Northern Ireland. The Alliance comprises representatives of support groups in Belfast, Newry and Mourne, Mid-Ulster and South Down.

    Among other speakers in Belfast were: the Health Minister designate; Michael OReilly, director of the Dublin-based Irish M.E. Trust; and social policy researcher Dr Jay Wiggan from Queens University, Belfast.
    Nielk and merylg like this.
  18. Enid

    Enid Senior Member

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    Thanks to Dr Enlander for coming our way and waking people up here.
    Nielk likes this.
  19. Firestormm

    Firestormm Guest

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    He also met with Forward ME yesterday at the House of Lords, Enid. I haven't heard anything about that yet but was pleased to see he had been engaging with the Northern Ireland Health lot. NI needs some urgent attention. It' shocking the state of things over there. Shameful.
    Nielk likes this.
  20. Enid

    Enid Senior Member

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    Great news firestormm - I'm waiting to see which members of the medical establishment will attend (at last) the Iime London conference 2012 (all the best researchers) too.

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