Calling all PWME in the UK !!!

Discussion in 'Fibromyalgia Main Forum' started by Paul34me, Oct 27, 2002.

  1. Paul34me

    Paul34me New Member

    Hi all,

    Please can you help ? I need a big favour, I have started a new yahoo group for PWME calling for change, and I mean it ! I have 62 members so far in just over a week. If we get enough members I believe we can do it. The 3 main UK Charities have a group called "MessageUK" and as you may know, they are premoderating the post and censoring what they deem as unsuitable for the members to discuss.

    The name of my group is "Not-messageUK" most of the members I have so far are from the charities group. The only rule I have stipulated for my new group is that we speak the 'truth'. The theme of the group is as follows:

    Frank and open discussion for people with ME and their carers who want a group where messages are not subjected to pre moderation and archives for members only. The main purpose of this group is to discuss the issues that are being censored by the group run by the 3 main UK ME charities, namely the MEA, AfME and AYME.

    Post message: Not-MessageUK@yahoogroups.com
    Subscribe: Not-MessageUK-subscribe@yahoogroups.com
    Unsubscribe: Not-MessageUK-unsubscribe@yahoogroups.com
    List owner: Not-MessageUK-owner@yahoogroups.com

    Please inform as many people about this and ask them to support the group by joining. We need as many people as possible to join now and hopefully speak out, while the MRC are planning their reasearch stratagey. The 25% group are also asking for people the write to the MRC and the MP's about future research funding. Information on this can be found on their website.

    I hope you can help !


    Sincerely
    Paul

  2. Paul34me

    Paul34me New Member

    Hi all,

    Please can you help ? I need a big favour, I have started a new yahoo group for PWME calling for change, and I mean it ! I have 62 members so far in just over a week. If we get enough members I believe we can do it. The 3 main UK Charities have a group called "MessageUK" and as you may know, they are premoderating the post and censoring what they deem as unsuitable for the members to discuss.

    The name of my group is "Not-messageUK" most of the members I have so far are from the charities group. The only rule I have stipulated for my new group is that we speak the 'truth'. The theme of the group is as follows:

    Frank and open discussion for people with ME and their carers who want a group where messages are not subjected to pre moderation and archives for members only. The main purpose of this group is to discuss the issues that are being censored by the group run by the 3 main UK ME charities, namely the MEA, AfME and AYME.

    Post message: Not-MessageUK@yahoogroups.com
    Subscribe: Not-MessageUK-subscribe@yahoogroups.com
    Unsubscribe: Not-MessageUK-unsubscribe@yahoogroups.com
    List owner: Not-MessageUK-owner@yahoogroups.com

    Please inform as many people about this and ask them to support the group by joining. We need as many people as possible to join now and hopefully speak out, while the MRC are planning their reasearch stratagey. The 25% group are also asking for people the write to the MRC and the MP's about future research funding. Information on this can be found on their website.

    I hope you can help !


    Sincerely
    Paul

  3. Paul34me

    Paul34me New Member


    Good qusetion,

    Yeh, I know it was me and my moderator rowing :( I'm embearessed to say, and I didn't think anyone would want to see it. Although I realised I was being hypocritical and so I have decided to leave any future post there. Having said that if someone posts pointless agrevation or racist abuse eg, what do you ? Do leave them there because you have got a 'rule', and to break it would make you a hypocrit ? No, that would be just silly. So I can only do what I can. We are none of us infalible, and I certainly wont pretend I am.

    You will realise me calling for action may upset some people, so I will have to consider that there will be some on there trying to spoil the group. I hope we are all wise enough to see that, and to be able to see the motives behind posts without reacting to them.

    The point is we fight for truth, and not each other. The situation in the UK is unjust and imoral, we have to change that, and I can only do my very best.

    BW
    Paul

  4. sb439

    sb439 New Member

    Hi Paul,
    I lived in the UK for 15 years before moving to the US this summer, and (after having done my own web-research on CFIDS) I found the 'official (NHS, etc.) line on ME/CFS in the UK appalling and depressing.
    If even the ME charities censor what you can say, that sounds really bad. I'm curious what the topics are which they censor, if you don't mind telling?
    all the best to your endeavour in any case,
    Susanne
  5. sb439

    sb439 New Member

    ... that explains ... among other things why when an English friend of mine with CFIDS (now also living in the US) sent an e-mail to MessageUK, pointing out some recent research articles on CFIDS, it never made it to the message board.
    Susanne
  6. Paul34me

    Paul34me New Member

    Hi all,

    This is a letter I just posted to the editor of the Belfast Telegraph, followed by the thread that inspired it. I hope this will help explain thing clearer.

    BW
    Paul


    Dear Sir

    I am aware that you have been emailed by Tony Britton, the PR and Communications Manager from the The ME Association, in response to your article: (ME "no joke" says top doctor, Belfast Telegraph, 28 October)

    Please don't be put off covering articles on ME in the future. As an ME sufferer myself I was delighted with the truthfull and acurate repoting from Steven Jaffe. Tony Britton does not represent myself and thousands of other ME sufferers. Patients are leaving the so-called 'charites' in favor of joining the '25% Group' http://www.btinternet.com/~severeme.group/ because of their conteptuous attitude towards the sufferers they claim to represent. The noble Countess of Mar mentioned in the article is the patron for the '25% Group'. They were the group who help with the making of the long awaited report published by the Chief Medical Officer (Sir Liam Donaldson) back in January this year.

    As you may already know, the three main ME Charities in the UK have set up a website for people with ME, and it has a forum where sufferers were told they could discuss issuse of concern. However, the forum has resently been pre-moderating 'all' the emails sent there, something no other group has done, and many posts that do not conform to the psychological school of thought are being censored by Tony Britton. This has infuriated many seriously ill people, so in response to this I have personaly set up a yahoo group where patients can discuss the issuse Tony Britton ( the PR and Communications Manager from the The ME Association) feels compeled to censor.

    The ULR for the new group is: http://groups.yahoo.com/group/Not-MessageUK/ Please feel free to publish it in your paper, so that people with ME know they have a place where they can have frank and open discussion without censorship. I would be more than happy to discuss this with you further should you wish. Thank you for you time.


    Sincerely,

    Paul Lynch
    Listowner, Not-MessageUK



    ( I have copied on pasted the email posted by Tony Britton to the group run by the charities for reference.)





    Subject: Belfast Telegraph
    Created on 29 Oct 2002 15:56:59
    Message #4659 of 4676
    Posted By Tony Britton View discussion(3 messages)
    --------------------------------------------------------------------------------

    -----Original Message-----
    From: Tony Britton
    Sent: 29 October 2002 15:44
    To: 'letters@belfasttelegraph.co.uk'
    Subject: Letter to the Editor

    Dear Sir

    M.E. would be less of a joke if journalists stopped dredging up that hoary old chestnut that the illness has often been dubbed "yuppie disease" (ME "no joke" says top doctor, Belfast Telegraph, 28 October). The illness is real, physical in origin, and affects thousands of people from all walks of life. Many people with it are so ill that they have difficulty leaving their homes or even getting out of bed. It's no joke at all to be robbed of normal life in this way.

    People with M.E., who feel isolated by their illness but have access to the web, can share their experiences and obtain mutual support on an email message board called MEssage-UK run by three charities, including ourselves. Check us out on www.smartgroups.com/groups/message-uk

    Tony Britton, PR and Communications Manager
    The ME Association
    4 Top Angel, Buckingham Industrial Park
    Buckingham MK18 1TH
    Tel 01280-818963 mobile 07880 502927 fax 01280 821602

    --------------------


    RE: A more serious ME/CFS article in the Belfast Telegraph

    Thanks for posting this Caroline.

    A few more aritcles like this would benefit us IMO. I may even print it out and give it to my GP. Can't imagine why anyone with ME would not like this article. Although, I bet the psychs are furious as it clearly points out that the illness is indeed physical.


    I especially like the way the reporter introduces the article. "It is a much misunderstood disease which has been treated by newspapers and even by many doctors with disdain." Brilliant. You can't beat the truth. They were the reporter words, and for a change they were truthfull and accurate. Having siad that, I have never heared ME called yuppie "disease" before, but I have heared it being called yuppie flu ? But at least it cleared that old myth up too. Dr Elander's credentials sorted that out. And when I heared the Countess of Mar being mentioned I knew this was a 'good' article.

    But the best bit IMO was the last quote by Dr Elander, "Insist the condition is physical and must be treated" I think it is criminal that some people continue to say they don't know whether it's physical or psychological. Especially when they should know better.


    Best Wishes,
    Paul



    Author wrote:
    > Belfast Telegraph - Monday, October 28 2002
    > A leading New York doctor who comes originally from Northern Ireland
    > believes
    > that ME sufferers deserve better treatment.
    > Steven Jaffe reports
    > ME "no joke" says top doctor
    > It is a much misunderstood disease which has been treated by newspapers and
    > even by many doctors with disdain. ME (Myalgic Encephalomyelitis) has often
    > been dubbed Yuppie Disease, as if the sufferers were all middle class
    > neurotics
    > who needed nothing better than to learn how to take it easy, between long
    > stints at the office.
    > "Not so," says Dr. Derek Enlander, an expert in the field.
    > Belfast-born Enlander practices in New York. Educated at Belfast Royal
    > Academy,
    > he trained at Stanford in the late 1960s.
    > But more than a trace remains of his Belfast accent and he journeys back
    > home
    > whenever he can to see relatives and friends.
    > In New York he has an impressive reputation in his treatment of patients,
    > and
    > is the doctor designated to attend to the Prime Minister and members of the
    > Cabinet during their visits to New York.
    > In the US alone, there are more than three million ME sufferers.
    > A new book by Dr Enlander has been hailed as a major contribution towards
    > assisting medics and patients in recognising the symptoms of ME, and
    > evaluating
    > the treatment of what is also known as Chronic Fatigue Syndrome.
    > "ME is not a disease dating from the 90s" explains Enlander in his smart
    > surgery in the upper East side of Manhattan. This point is made nicely on
    > the
    > book's cover which depicts not a Jaded stockbroker or burnt-out lawyer but a
    > 19th century nurse.
    > "Florence Nightingale was a sufferer," points out Enlander, 'and so was
    > Charles
    > Darwin on his return from the Galapagos".
    > Dr. Enlander sees patients who have had their lives ruined by the disease.
    > "Careers are lost, marriages are terminated and life-time ambitions are
    > dissolved."
    > In fact, the original case which sparked his interest was a childhood friend
    > who had to give up his job in Belfast.
    > Enlander acknowledges the causes of the condition are still unclear and
    > there
    > are difficulties in achieving a quick and accurate diagnosis.
    > Contrary to a body of opinion within the psychological profession, "it is
    > most
    > certainly not all in the mind," Enlander emphasises. "The physical symptoms
    > are
    > often cyclical and, as well as excessive tiredness, there are dysfunctions
    > of
    > the immune system, skin sensations, such as easy bruising and abnormal heat
    > and
    > temperature changes."
    > The Duchess of Mar in a speech to the House of Lords admonished a paper
    > presented to the Chief Medical Officer earlier this year; which argued that
    > the
    > condition was psychological. The Duchess and Enlander have been in
    > communication on the subject.
    > Enlander warns there are powerful vested interests at work in making ME
    > appear
    > a "joke disease". Employers, government organisations and insurers may all
    > have
    > a part to play in this, as well as an insensitive media.
    > Enlander says ME isn't contagious, although peculiar unexplained outbreaks
    > affecting families and other groups have been reported. "If an infectious
    > agent
    > is responsible for immune changes", he points out, "the incubation of the
    > agent
    > has long passed when the condition becomes obvious, thus the risk of
    > infection
    > has passed".
    > As for treatment, Dr. Enlander's research follows a protocol that requires a
    > complex injection to boost the immune system. He also talks about the
    > potential
    > importance of lifestyle changes, cognitive therapy, anti depressant and anti
    > anxiety drugs, and a range of other treatments.
    > Depression, he emphasises, is a secondary depression caused by the disease,
    > and
    > is not the prime cause of the illness.
    > Enlander maintains an open mind to alternative medicine approaches. He
    > listens
    > to what his patients tell him about the benefits sometimes experienced from,
    > for example, phototherapy, acupuncture, or herbal medicines.
    > The book is concise and to the point. Technical arguments are rendered easy
    > to
    > follow.
    > And Dr Enlander offers the following advice to sufferers who feel they are n
    > ot
    > getting a serious hearing from their GPs.
    > "Insist the condition is physical and must be treated" he says.
    > "The CFS (Chronic Fatigue Syndrome) Handbook "by Derek Enlander MD,
    > published
    > in the USA, is available by order through www.amazon.com or UK book shops
    > (price £20).
    > Love Caroline xxxxxx PS Moderator, please feel free to remove the last para
    > if this is considered blatant advertising.
  7. Paul34me

    Paul34me New Member

    Please pass this on to anyone in the UK.

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