When will there be a Public Inquiry into ME ?


When is the neglect, abuse denial negation and downplaying of ME by wrongful
psychiatric involvement and interpretation going to stop?

 How many more people have to die?

 How many more people who are tormented and physically suffering , in agony for years, to decades, will have to endure the misdiagnosis, misinterpretation by doctors and others and the misrepresentation in the NHS and the media ?

When will sense, honesty, integrity, genuine concern ,compassion and scientific research with proper, specific ME criteria, win through?

It is devastating to have an incurable disease, but to have one that is disregarded and negated, knowing you are left on the edge of survival and society because a group of powerful people representing vested interests chose to spread confusion and untruth about this serious physical disease , chose to complicate the illness and bury it in a sea of generalised fatigue conditions is not only shocking and unfathomable to the sufferer, it is way beyond unacceptable.

Why is this continuing? Who has the integrity to speak the truth and stop sitting on the fence? Who has the integrity to challenge the lies about ME?

Who is willing to acknowledge the abuse for the past 2 decades that we with a genuine neurological disease have had to put up with? 

Very few it seems.

I want to get well. I want to get better. I want to know what is the physical cause at the centre of my disease. I want proper medical investigation. I want the tests that everyone else is entitled to on the NHS, except if you have the label ME. I want this senseless negation and waste of lives to stop.

The day I was labelled with ME,  respect and medical equality went out the window. The hope of finding our what has gone wrong in my body disappeared from view that day and has never returned.

Twenty years on there are very few practitioners able to diagnose, willing to seek, able to understand. Most are compromised or don't believe in it or don't believe its as bad as it is or believe its all or mostly in the mind or sign up to the misrepresentation and focus on generalised fatigue, ignoring the most serious neurological symptoms altogether.

 How wicked and wrong and misplaced is that? How cruel ? The most severest, the most damaged and tormented are left vulnerable frail and unsafe in a system that is failing them on every level. The medical system is unable to offer what is needed. 

That is a frightening place to be when you don't even know if someone will understand your physical dysfunction or accept it or take it in to account when they recommend treatment,
anaesthesia, advise.

 When you don't know if they even believe you are severely physically ill, when their intervention can harm you, worsen your symptoms, harm your body, leave you devastated and traumatised for months and years afterwards. 

When you have to trust people to represent you, when they have no real clue about your physical nightmare reality.

 When even if someone says they understand ME, yet still they are misinterpreting it.

When the focus is on fatigue and all the complex multi system dysfunction is ignored or pigeon holed into a pet theory to suit them rather than look at the reality and impact,when risk assessment is not done because the illness is not understood or acknowledged properly.

When are we going to be treated with equality ?

When are we going to get consultants who know about the neurological disease ME and who can actually make recommendations that help not damage us? 

When will research actually be done on the correct group of
people who fit in to the ICC criteria for ME ?

Watered down research populations mean watered down results, waste of money, lack of helpful findings, further confusion over who the research is actually for.

When will we feel safe to have treatment because it will be
appropriate, relevant, address the disease process,be suitable and effective, not risk our lives and our health, not based on guess work , based on no proper medical testing; fanciful risk taking ?

I don't want to be a guinea pig for people's pet theories anymore. I want a proper medical service and respect for my disease. I want medical support and people who know what they are doing , in my life. I don't want to be frightened by the
severity of my illness,left to get on with it and try and figure it out because the alternative of involving people is to risk abuse and further harm.

 I simply do not want to hear that any more people have died or killed themselves, because of the stark, physical ,tortuous reality of having ME.

 What more does it take to get heard and honoured?

 When will there be a public inquiry?

 Where is the public outcry? 

Stunningly silent. Pitifully small.

Linda Crowhurst Dec 7 2012


Comments

  1. Your words speak for millions of ME sufferers across the globe! The ongoing crisis for ME patients is a worldwide crisis for the ME community of patients, families, and care-givers. I'm in crisis! After two decades of hoping and searching for valid, helpful, and pertinent information to turn the tide with my health, how much longer do I and others like me have to wait?! I've been to the brink of death and circled the drain more than once, and I'm doing my best to inch myself away from the drain. With multi-system dysfunction and the cascade of symptoms many of us ME sufferers endure, the greatest disservice to our community has been to be marginalized as a whole and to have our symptoms be somatisized. Many ME patients, including me, share a large percentage of the same lists of symptoms and challenges as those with the diagnosis of MS, Parkinson's, Alzheimers, Fibromyalgia, Sjogrens, HIV, etc. Why are those communities of patients treated with dignity while we are often left to advocate for ourselves in spite of being too ill to do properly and vehemently do so? Could it be that the ongoing battle over the name for our myriad of symptoms is a ruse to delay, confuse, and discourage valid research?! Hmmm......


    The domino effect of what happens in the medical community of one country has far-reaching repercussions elsewhere.

    ReplyDelete
  2. You wrote, eloquently, as usual:

    " What more does it take to get heard and honoured?

     When will there be a public inquiry?

     Where is the public outcry?"

    I wish I had an answer.


    ReplyDelete
  3. All CFS & ME'ers have to do is start screaming the "A" word...it's ceratinly worked for me! My case goes all the way up through the NIAID, NIH, CDC, American Red Cross, WHO, to the United Nations.

    Chapter 33 of Hillary Johnson's: Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome (CFS) Epidemic is entitled "HIV-NEGATIVE AIDS."

    Neenyah Ostrom's book "America's Biggest Cover-up: 50 More Things ...CFS and Its Link To AIDS" cites as it's #1 THING: "Some
    CFS Patients May Be Non-HIV AIDS Cases."

    NON HIV AIDS cases have been cited in medical journals since 1992.

    NON HIV AIDS cases are ICD-coded: "Chronic Fatigue Syndrome."

    Will CFS & ME ever make any progress, unless we acknowledge the fact that HIV is not the cause of AIDS?

    Just google "NON HIV AIDS."

    My life with NON HIV AIDS: www.cfsstraighttalk.blogspot.com

    ReplyDelete
  4. UK PROGRESSIVE published one of my letters about NON HIV AIDS.

    This marked it’s 8th publication on 4 continents. This topic has been censored from mainstream media since 1992.

    www.ukprogressive.co.uk/the-aids-like-disease-seldom-mentioned/article20891.html

    ReplyDelete
  5. CFSgate = GWSgate = AIDSgate

    An Allied NATO Government cover-up so big that it's really 3-in-1.

    Chronic Fatigue Syndrome (CFS) =
    Gulf War Syndrome (GWS) =
    Acquired Immune Deficiency Syndrome (AIDS)


    {none of which are caused by a retrovirus}

    ReplyDelete
  6. So well put Linda.
    The circumstances have been defined from the UK side by political pressure in the inner circles of power and skilled PR. A certain psychiatrist is a genius at PR. And he is married to a politically influential woman. In addition the psychiatrists have positions, names and connections from which to dominate Britain's medical establishment.
    We need celebrities. Also Cameron and Milliband and their cabinets, and the media. And very visible demonstrations -- try the bloke who directed the Olympic program.
    I know this is daunting, but that is how every other group from Cancer to Aids has done it, and the world has gotten a lot noisier and harder to penetrate since the AIDs days.

    ReplyDelete
  7. My biggest fear is about anesthetics and drugs where the prescribing doctors refuse to recognize my ME before making decisions. Thank you for bringing that up in your letter. It is absolutely terrifying having to deal with specialists who know nothing of my illness and proceed as if it does not exist!

    ReplyDelete

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