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Canadian charity Action CIND write open letter to Lancet about PACE

Discussion in 'General ME/CFS News' started by Sasha, Feb 14, 2016.

  1. Sasha

    Sasha Fine, thank you

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    Saw this on IiME FB, which linked to the charity's FB page:

    https://www.facebook.com/notes/action-cind/pace-trial-an-open-letter-to-the-lancet/675517282550693

    CIND stands for Chronic Immunological and Neurological Diseases.
     
    Webdog, Hilary, Esther12 and 20 others like this.
  2. btdt

    btdt Senior Member

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    I just discovered Action CIND today.

    So what is then is this the new name for all these things... and is this site using this acronym as a self identifying term?
     
  3. rosamary

    rosamary Senior Member

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    Good letter.
     
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  4. Sasha

    Sasha Fine, thank you

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    First time I've seen that acronym. It's not in general use as far as I know.
     
  5. btdt

    btdt Senior Member

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    It is crazy how long this has gone on without answers.... we don't even know what to call it... is cf/f/ progressing to mcs to something more. It is crazy an it is crazy making to live thru this for 30 years... if your not crazy to start with it sure could make a person crazy so could the drugs they give us to treat it... I have come to wonder if the drugs were never meant to treat it but more to make me stupid and crazy so I would not bother the doctors or politicians too much. I am sure I am not the only one who lived this and thinks the same ...who knows maybe I am.

    You guys have likely seen this but it is new to me...
    https://www.theguardian.com/lifeandstyle/2016/apr/04/chronic-fatigue-syndrome-cfs-taken-seriously

    "To understand why the medical industry has treated the illness with such disdain, you have to go back to 1955 and a sudden outbreak of CFS at the Royal Free Hospital in London which affected approximately 300 people and led to the closure of the hospital for three weeks. The causes of this mystifying epidemic were unknown, but pathology findings suggested something had triggered inflammation in the brain and spinal cord, but with no obvious cause, health officials charged with investigating the outbreak two decades later concluded it had been down to mass hysteria. In the 1980s, psychiatrists in the US and UK involved in investigating a similar CFS epidemic in Nevada decided the illness was largely psychogenic, a result of patients believing they were really ill and allowing themselves to become deconditioned. It’s a tag that has stuck to this day. In 2011, the Pace trial – a five-year study of CFS funded by the UK government, recommended cognitive behavioural therapy and graded exercise regimes as treatments for the disease."

    They do not mention an outbreak in Canada in 1985 and many others around the world found at this link
    http://me-pedia.org/wiki/List_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome_outbreaks

    first link
    "Over the past 20 years, though, a handful of scientists have defied convention by looking deeper into the disease than ever before, sometimes inspired by chance events. Professor Garth Nicolson, founder of the Institute for Molecular Medicinein California, noticed a wave of CFS in soldiers returning from the 1990-91 Gulf war, among them his own daughter. “The more we looked into it, the more we found that infections appeared to be the root cause, which was why some of the sufferers transmitted CFS to family members,” he says. “Infections aren’t a universal cause, but they are definitely one of the main contributors.”"

    " “In some cases, something may have damaged the mitochondria which provide energy for immune cells, brain cells and your muscle cells.” I believe this could be the drugs taken as treatment ...ssri drug cause mito damage


    Rather than genetic infection being passed on is possible... I had a boss who had yuppy flue when I first got sick... she was rich and did not need to work I wonder if this what started it with me.. I also think it could be host of things all leading to further disability. who knows...

    next bit... reminds me of a pain clinic I went to where they pushed me beyond what I could do started new drugs I gave up trying to reason with them and finally just lied and said I did all the exercises they wanted done... I had to I could not leave and could stand to fight any longer I was too tired...
    " “We’ve been taking diseases that aren’t even related to each other, but because fatigue is the unifying symptom, we’ve thrown them in the same bucket and treated them the same,” Dimmock says. “If you prescribe a graded exercise regime to a CFS patient with an energy-production impairment, you can do a lot of harm. It’s like taking patients who all suffer from shortness of breath, but the root causes range from asthma to angina. You would never treat them as the same group of patients.”

    It ends with this
    "
    I believe we will know the answer within the next five to 10 years.”

    I wonder how many of us will be gone by then... do I need to say it too little too late...
    yes a bitch fest... sorry you don't need to hear it either I can't help myself
     
  6. btdt

    btdt Senior Member

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    I found where this new name came from ...found it here on PR
    http://forums.phoenixrising.me/index.php?threads/in-memory-of-thomas-m-hennessy-jr.25427/

    "

    He was devoted to the cause and determined to make a difference in the lives of those who suffer the most. It is surreal how such an outspoken and dedicated voice has been prematurely extinguished. Thomas, you will not be forgotten.

    Founder of the “May 12th” international movement

    He will perhaps most warmly be remembered for the founding of May 12th Awareness Day, which has become a truly international event for our community. Asked about it's origins, Thomas said:

    “I started the concept of Lobby day back in 1988, when I tried to convince Barry Sleight and his wife, Michelle Freeman, to join me and enlist my father, the top Lobbyist for J. Paul Getty in Washington D.C., to work for FREE on our behalf to get Congress involved.”

    [​IMG]

    One reason for raising awareness and keeping up the political pressure was clearly at the front of his mind, as was the dire alternative:

    “One stroke of the congressional pen could get us millions of dollars for funding…or get us stricken from getting any funds for research at NIH.”

    Why, you might ask, was May 12th chosen as a date? It was to memorialize the birth date of Florence Nightingale, the English army nurse who inspired the founding of the International Red Cross, and who was believed to, “have contracted a paralyzing, CIND-like illness in her mid-thirties and spent the last 50 years of her life virtually bedridden.”

    In 1992, Tom also founded the organization RESCIND (Repeal Existing Stereotypes for Chronic Immunological and Neurological Disorders), its intention was to be a virtual non-profit organization, and it aimed to be a website full of information for people who could not leave their home. He said then of May 12th that:

    “We would all agree to come together at least ONE day a year for May 12th to Lobby Congress and get the word out to the media that these CIND (Chronic Immunological and Neurological Diseases) were costing our economy tens of billions in lost productivity and billions in medical costs.”

    Unfortunately, the RESCIND website has had to close due to lack of funding support.

    His passionate entreaties

    Tom deplored the name “Chronic Fatigue Syndrome” and, some 24 years ago, in the first formal meeting called to discuss a name-change, he declared:

    “There are hundreds of thousands if not millions of Americans and millions more worldwide who are left destitute by these terrible diseases. But you will never get the respect, the research dollars, and the acceptance of your peers until you change this asinine name. We are tired of being sick, not sick of being tired. And if you do nothing else today, change the God damn name!”

    He later said of that testimony:

    “I explained to that audience back in April 1989, that IF they didn’t change the name that very day, and nip this problem in the bud, it would cause a mess for decades and it has.”

    How right he was!

    In 2011, Tom also revealed how passionate were his feeling towards the adoption of a better definition for the illness he preferred be named as Myalgic Encephalomyelitis:

    “...we need to adopt the Canadian Consensus Definition, by Carruthers et al. TODAY and scrap every other definition in use anywhere in the world. Period! Go with the name Myalgic Encephalomyelitis, which is not a perfect name, but it describes a CIND (Chronic Immunological and Neurological Disease) which has had a WHO classification for 40 years. The Canadian Consensus Definition must be adopted worldwide immediately. All other definitions and names need to become moot-immediately.”

    Who am I to doubt his reasoning and hard work... seems he was and is right...

    Does anyone here know why his advice has not been taken? I am just curious to see the responses as maybe there is a real good reason I can't imagine.
     
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