Pragmatism : Why the ME Leadership is so wrong


There's an argument that goes something like this :

In the real world almost all ME/CFS research is carried out on people with Fukuda CFS ...the only way to sort out the ME/CFS mess is to identify clinical and pathological sub-groups under the ME/CFS umbrella.

We could identify it as the pragmatic argument.

Except, what has " pragmatism" ever done for us ?

In the USA, decades of “pragmatism” has arguably led to the 1% growing richer and the remaining 99% fighting for their  scraps. As Fishoutofwater comments :

What have "pragmatic" Democrats done for us in the past decade? They signed off on a disastrous war in Iraq that drained the treasury leaving America trillions in debt. They signed off on deregulation of banks and financial firms leading to the greatest economic failures since the Great Depression. And they signed away our freedoms when they supported the Patriot Act.


"Pragmatic" Democrats ..sold our health care out to insurance companies. Health care costs continue to spiral out of control while quality drops because the middle men are draining off resources and stopping single payer health care.

We can't cut greenhouse gas emissions because "pragmatic" Democrats have sold out to big coal, big oil and big polluters. Texas is dying in a 500 year drought, but the pragmatists don't have the courage to speak of climate change.

It was “pragmatists” who drew up the CDC criteria.

I wonder what those founding fathers from long ago, : Samual Adams, John Adams ,Thomas Jefferson and Benjamin Franklin would make of America today ?

No one would call them pragmatists - radicals !

It is America that is responsible for perpetuating the neoliberal orthodoxy of deregulated financial markets and unfettered corporate power around the globe, that has brought us all to the brink . Few have been greater  victims  of the rampant  corporate    wickedness , than people with ME; the giant insurance companies making  damn sure,  that  no one with ME gets treated.

CFS” is the greatest medical scandal in history.

Give me leaders that stand for something. “ cries Fishoutofwater. Yes I shout in
 reply, although no one hears me.

If ONLY our leaders in the ME Community stood for something !!! There is not one leader in any of the big ME Organizations that I know of speaking up for ME – apart from Simon Lawrence of the 25% Group !!!

The big ME organizations have compromised the truth for decades by not standing up to the psychiatrists. Those who have not compromised, like Simon, have simply been sidelined .

And now those same “leaders” , shame on them, are advising “pragmatism” …....

The radical bravery and leadership shown by Scotland inspires me to keep waving my tattered little flag in the air : “No compromise !!” it has read, all these long years.

You see, as Henry Rollins says : When you start to doubt yourself the real world will eat you alive.












Comments

  1. excellent blog as always! I have decided that if I can't barrell my way THROUGH 'them'...I will simply go AROUND 'them'! One way or another - granted, at a snail's pace! - but I WILL go forward for ME. Imo, a 'no compromise' can be found in the new 2012 companion to the 2011 ME ICC: the MYALGIC ENCEPHALOMYELITIS - adult & paediatric - INTERNATIONAL CONSENSUS PRIMER ('ICP') for Medical Practitioners. I am asking everyone that is able - to read and if you agree - please SHARE WIDELY! (It may be the way forward - so expect suppression.) http://www.hetalternatief.org/ICC%20primer%202012.pdf

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  2. Thank you so much - you are absolutely right about the Primer. There is no possible compromise on the biomedical truth of ME, which has nothing to do with CFS.

    I love what you say about going AROUND ! That is very profound - rivers simply flow around obstacles; we keep going, we keep moving forward .

    I posted this a while ago :

    1. Do not Compromise . Do not accept any service based upon the CDC or NICE Criteria - they have nothing to do with Myalgic Encephalomyelitis.

    2. Do not Compromise. Strive always to see beneath the rhetoric, whether it be the glossy words of an ME Organization that has sold out to the psychiatric lobby or any attempt to bamboozle patients into accepting a therapy-led Fatigue rather than a biomedical ME service.

    3. Do not Compromise. Never be afraid to speak your truth , no matter how awkward that may be to others or how angry it might make people feel.

    4. Do not Compromise . Never use any term to describe the illness apart from the correct one, which is Myalgic Encephalomyelitis (ME). Abandon the forward slash CFS (/CFS) ; if you have to refer to "CFS" then clearly state the truth :" ME , wrongly called 'CFS'."

    5. Do not Compromise . Never accept inferior , dismissive or inadequate treatment for this World Health Organization classified neurological disease. Use the formal complaint structures and be prepared to go to the very top to obtain the biomedical recognition of ME that people are entitled to.

    6. Do not Compromise. Do not accept the psychiatric propaganda that ME is about inappropriate sickness beliefs. Be prepared to stand up to everyone on this : your family, friends, next door neighbours; they do not understand , they probably never will ever understand what the person with ME suffers.

    7. Do not Compromise . Never accept slick arguments based upon a relative truth. This argument may sound plausible relative to itself, but it will not fit into the absolute truth of ME. Anyone can make a false argument based upon a false premise, for example that fatigue is the main symptom of ME.

    8. Do not Compromise. People's lives are at stake and people are neglected,people are rubbished, people are dying of this disease; never forget that one individual standing up can make a huge difference in the world.

    9. Do not Compromise. Never give up hope that change is coming, that there will be a biomedical breakthrough and that the more you speak up the sooner it will come.

    10. Do not Compromise. Blaze a trail for truth. That way, ultimately, we win.

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  3. Hi. Whilst i agree with your main point, i very much disagree with the 'who' part, because in my opinion, Jodi bassett is doing the most by far, and successfully so. But thanks for raising awareness on a tricky subject.
    Alison bell
    co-authoress of the Tinkerbelle and hummingbird m.e. Blog

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  4. I agree too Alison - Hummingbird is way up there in a unique class of its own; way, way before Stonebird, I relied upon Hummingbird , plus Malcolm Hooper and Margaret Williams, to educate me in ME .

    Jodi Bassett has done so much to raise my awareness, my consciousness , to this day I turn to Hummingbird over and over again, as a major, authoritative source. I don't think I have published an article - or a book, without quoting Jodi somewhere !

    I have the greatest possible respect for Hummingbird, its penetrating clarity, extraordinary range and wealth of material and above all its unwavering stance on the biomedical truth of ME.

    I was referring more to the big UK Charities; I should have made that clearer .

    Thanks so much Alison for commenting.



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    Replies
    1. Thanks for reply. I had never seen your site before i was directed to this post. And whilst i am glad u agree about hfme, i wonder if u know that whilst having two of t worlds most vocalists about m.e. being caused by an enterovirus only, they put in a recent newsletter (that iv not seen but told about) that they now believe m.e. may be caused by some bacterial infection. I mean, seriously? So disappointed in who were a great charity, to now be so Cfs! However much they claim otherwise. Anyway, thanks for your reply again. Alison God bless

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    2. It's good to hear again from you Alison. All I can say is that gastric issues are such a major feature of Linda's Severe ME, you cannot help thinking there may be a bacterial infection - on some level.

      Environment, trauma, virus, bacteria - the possible list of causes is extensive; no one can say for certain, or what the inter-relationship is - which is so frustrating, to say the least, there are so many suffering- no surprise though, given how few resources even now after all these years, are being devoted to physical research.

      As I write this, I know that ahead of me lies another struggling day of Linda in intolerable suffering...

      God bless you too Alison.

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    3. although i totally disagree with you, Im not going to debate the cause of m.e. with you here, not the place, and i am feeling far too ill. But what i will say, is that if the 25% charity wish to go against the knowledge of their patrons, who are the most knowledged m.e. doctors in the world, surely they need to stop haveing them as their patrons any longer. Hyde and Dowsett have had decades of both testing and interacting with hundreds of thousands of patients, and have come up only with one possible answer. If the 25% charity do not agree with that very finding, which is intrinsical to both doctors beliefs, they need to part ways, and stop saying the believe in their work and knowledge. Also, not sure how you can say you rely on hfme, when it clearly has the belief that M.E. is only caused by enterovirus, not sure how can you believe the rest when you disagree with the very main belief? Not having a go anywhere here, not at all, just replying. Anyway. Really have to stop typing. X

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    4. although i totally disagree with you, Im not going to debate the cause of m.e. with you here, not the place, and i am feeling far too ill. But what i will say, is that if the 25% charity wish to go against the knowledge of their patrons, who are the most knowledged m.e. doctors in the world, surely they need to stop haveing them as their patrons any longer. Hyde and Dowsett have had decades of both testing and interacting with hundreds of thousands of patients, and have come up only with one possible answer. If the 25% charity do not agree with that very finding, which is intrinsical to both doctors beliefs, they need to part ways, and stop saying the believe in their work and knowledge. Also, not sure how you can say you rely on hfme, when it clearly has the belief that M.E. is only caused by enterovirus, not sure how can you believe the rest when you disagree with the very main belief? Not having a go anywhere here, not at all, just replying. Anyway. Really have to stop typing. X

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    5. Thanks for your comment.. What you say is not my understanding - but I appreciate your reply.

      Greg

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    6. Thanks.
      Can you clarify, not your understanding or not you opinion/belief. Sorry, Im a stickler for words, all i have i guess. Don't want to misunderstand you obviously. Alison
      ps noticed my previous comment posted 2c, apologies, feel free to delete one sir.

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  5. Greg, I am 'anonymous oct.22' (Jackie Nance, an American and a longtime patient of ME clinician/researcher Dr. John Chia)...thanks for your kind reply!

    My husband was diagnosed with ME a little over two years ago(by Dr. Chia) - after 40 years of living together! That's really quite something - diagnosed SO MANY years apart! First me - then to our shock - him! (after a lifetime of robust good health!)

    We also have a niece who has had ME for 20 years - and as several other members are showing the dreaded signs and symptoms - I suspect that there will be more diagnosed in our family in the coming years, unfortunately.

    I have been moderate (housebound) to, at times, severe (bedbound) but recently experienced something close to a small 'remission' of short duration (less than 6 months) which I believe was due to an experimental antiviral and antiretroviral drug protocol - under Dr. Chia's guidance.

    My husband is still in that glorious golden 'window of opportunity' - 2-3 years ill - and has, for the most part, stabilzed from his rapid downward spiral - most likely due to his use of an immune modulator.

    My husband was MY caregiver (as well as the breadwinner of the family) when I became too ill to continue with my work as an artist.

    Now - we do our best to 'crash' at different times - so as to remain caregivers for one another! (of course, it rarely works out that way)

    Being in the U.S., both having adequate health care Insurance, in addition to the care of a dedicated (and brilliant) ME specialist helps to keep our hopes alive - that there WILL be a designated treatment for this awful disease, in our lifetime. Maybe - a cure.

    And as a PWME lucky to have received experimental treatments (when the majority are left with nothing at all!) - I have a responsibility to share my experiences (the pros and cons) with other patients and their carers - and say Please don't give up yet!

    While we wait, I try to be a 'bedside/couch advocate' online. I am so grateful that the new ICP has been released - I call it my 'ammunition'.

    My voice (though small & inexperienced) and a stack of papers (the ME ICC & ICP) are what I'm armed with and I intend to use them as effectively as I can. Also, I am 'adopting' your on-target 'do not compromise' list!

    In time, as the PRIMER is circulated, I expect great oppostition to it from my government - it represents a direct threat to the CDC's 'CFS Toolkit' for example....but those who support and promote it will NOT be stopped.

    To say that the disease Myalgic Encephalomyelitis has decimated my family is not an exaggeration! So I'm fighting for them, myself and those with no voice left at all.

    And I am a River.

    Kindest regards, to you both!...jackie

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  6. ....that's us two small voices Jackie !

    I am so sorry your husband too has ME, as you say that must have been a devastating shock. You are absolutely right though about the window of opportunity to try and treat the disease early.

    If only....nearly 20 years ago our GP hadn't struck Linda off his list and refused to treat her......

    I have huge respect for Dr Chia's work - you are blessed and lucky , I am delighted for you. AS you say you are one of the few who has actually received any treatment - most people are just left, for decades getting worse with nothing to help.

    The pros and cons are very important - for example Linda's been badly damaged by so-called expert clinicians. I am not sure that many really have a clue, especially when it comes to Very Severe ME. But gosh, those who take the time, to REALLY listen and not simply IMPOSE their idea of what should be done - what a profound difference they can make , to relieve at least some of the suffering !

    The Primer is explosive - to implement it, in a fatigue-biased world, will take all our strength and guts. It will test our do not compromise stance to the limit, I suspect.

    I commented yesterday , in reply to someone on Linda's post : The Agony of Living with Very Severe ME that I believe with all my heart a massive wave of change is gathering- your message today confirms that. However experience teaches me that this place can feel like the loneliest place on earth.

    That is why your brave voice is so important - it's really helped me, as I start this new day .

    Do stay in touch Jackie and I'd love to publish anything by you on Stonebird : www.stonebird.co.uk !!

    How wonderful you are an artist !

    xGreg

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