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"The Why: The Historic ME/CFS Call To Arms": new book by Hillary J Johnson

Discussion in 'General ME/CFS news' started by Dolphin, Apr 30, 2022.

  1. Dolphin

    Dolphin Senior Member (Voting Rights)

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    The Why: The Historic ME/CFS Call To Arms Paperback – April 26, 2022
    by Hillary J Johnson (Author)




    If you have acquired Myalgic Encephalomyelitis (a.k.a. “chronic fatigue syndrome”) in recent years, you may have wondered why the U.S. government has done so little to promote research or understanding of this life-destroying disease. If you are looking for answers, The Why was written for you.

    Scientific bias, doctors behaving badly, and misappropriation of federal ME research dollars all have played a role in the controversy. In The Why, I unravel deception by the Centers for Disease Control during the first 25 years of the ME epidemic that have fueled all the above.

    Here are eight questions my book answers.
    • When did ME begin?
    • What is the origin of the false name “chronic fatigue syndrome?”
    • why are well-established biological abnormalities found in ME and published in the medical literature excluded from the government’s ME diagnostic criteria?
    • why has CDC refused to establish a national reporting system for ME?
    • Why has the federal government crushed rather than encouraged attempts to isolate a causative pathogen in ME?
    • How did the specious but prolonged argument over whether ME is “real” or “not real” begin?
    • Who has benefited from the CDC's longstanding policy of disregard for ME?
    • Have any laws been broken?
    The Why shows how disabled sufferers were left vulnerable to everything from quack therapies to hate speech to financial impoverishment. Understanding this history may provide ME patients an ability to go toe to toe with a federal health agency that continues to harm rather than help. Raise your ME I.Q. Break the cycle of abuse and end the spread of ME.
     
    Sing, EzzieD, geminiqry and 23 others like this.
  2. Hutan

    Hutan Moderator Staff Member

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    Sing, EzzieD, alktipping and 9 others like this.
  3. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Thank you for posting this @Dolphin.

    I read Osler's Web. Excellent book.

    I'm really looking forward to reading Hillary Johnson's new book!

    A suggestion for those who can afford it: donate a copy to your library.
     
  4. Ravn

    Ravn Senior Member (Voting Rights)

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    Anyone know if there are plans to turn this into an audiobook?
     
    Ash, hibiscuswahine, Samuel and 5 others like this.
  5. Trish

    Trish Moderator Staff Member

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    I keep meaning to read Ostler's Web, but never got around to it. So I've ordered this one instead. I'll let you know what I think of it.
     
    Last edited: May 1, 2022
  6. Trish

    Trish Moderator Staff Member

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    It arrived this afternoon and I've read it already. It's less than 90 pages and is basically an expanded version of Hillary Johnson's talk to the IiME conference in 2009 with a few minor updates.

    Its focus is the wrongdoing over decades by the CDC in not investigating outbreaks, including Lake Tahoe, properly, and deciding that it's not to be taken seriously, misappropriating funds allocated for ME, renaming it CFS, making up the useless Holmes and then Fukuda criteria, and regarding it as psychosomatic. She names and quotes various individuals.

    Hillary Johnson is of the opinion, or was then, that ME is caused by a pathogen and is infectious, and with various proven biomedical abnormalities.

    I won't quote any of the text as Hillary Johnson makes it clear that even small quotes should only be used with her permission.
     
    MSEsperanza, Ash, Milo and 27 others like this.
  7. JemPD

    JemPD Senior Member (Voting Rights)

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    I only remember Dr Charles Shepherd (some years ago) talking about some errors of fact in Osler's Web. I dont know what the errors were, I have the impression the were things that were about events in the UK/British Drs but i cant be sure (its a long time ago)

    But it put me off reading that book, & it makes me somewhat wary of spending any energy on this one.

    I realise Dr S is fallible and i dont agree with him on absolutely everything, but it has seemed to me over the years that he is very keen on factual accuracy - not suggesting other people aren't, there are a lot of disputes among advocates about a lot of things - so I'm not saying he was right and Hillary Johnson is wrong, I'm just saying that by & large i trust Dr S so i'll be steering clear i think.
     
  8. Samuel

    Samuel Senior Member (Voting Rights)

    Messages:
    535
    does she say there is input INTO cdc causing the why? or direct export FROM cdc to e.g. uk or mayo?

    what does she say cdc insiders claim the disease consists of to one another? is there winking and nodding to the effect "we know it's dire, but let's shove it into the psycho quagmire for cronies or convenience or fun"?

    what does she say about pre-incline-village? it's not as if psycho was not employed before that.

    istr that at one point she wrote a blog post called the why, or possibly about it and using that name.
     
    alktipping, Amw66, Sing and 1 other person like this.
  9. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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  10. Andy

    Andy Committee Member

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    Grigor, MSEsperanza, Ash and 7 others like this.
  11. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    On the face of it this looks like unhelpful perpetuation of exactly the thing she is complaining about. Let me try some answers:

    • When did ME begin?
    Nobody knows. The outbreaks people talk about are largely irrelevant.
    • What is the origin of the false name “chronic fatigue syndrome?”
    It was thought up as a less misleading term than ME and is as good as most medical terms.
    • why are well-established biological abnormalities found in ME and published in the medical literature excluded from the government’s ME diagnostic criteria?
    There aren't any. And if there were they wouldn't be expected to turn up in diagnostic criteria.
    • why has CDC refused to establish a national reporting system for ME?
    What good would that do? It isn't a specific infectious disease as far as we know.
    • Why has the federal government crushed rather than encouraged attempts to isolate a causative pathogen in ME?
    Extensive attempts were made to look for pathogens and nothing interesting found. The consensus is that ME is triggered by all sorts of endemic pathogens.
    • How did the specious but prolonged argument over whether ME is “real” or “not real” begin?
    Mostly by people writing misleading stuff claiming we know what ME is when we don't.
    • Who has benefited from the CDC's longstanding policy of disregard for ME?
    Nobody.
    • Have any laws been broken?
    Who cares?
     
    MSEsperanza, Ariel, Jaybee00 and 11 others like this.
  13. Andy

    Andy Committee Member

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    "1/2 Obviously, virus that causes ME will not be a common virus like EBV, H6, CMV, (or bacteria chlamydia pneumoniae) etc. It will be new. Over 40 years, approx 10 virologists have looked and found new viruses or strong evidence of a new virus"

    "2/2 All of these virologists were minimally funded, often by patients, and their discoveries were quickly discarded instead of pursued by myriad vested interests. There's an ME virus--but no one is being encouraged (or paid) to look"

     
    MSEsperanza, MEMarge, Wyva and 4 others like this.
  14. chrisb

    chrisb Senior Member (Voting Rights)

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    4,475
    What is the evidence for that? "Post viral fatigue syndrome" was probably thought up as a better name. The evidence from Straus and Eisenberg is that ME was dismissed as being hysterical in nature, as proved by McEvedy and Beard
     
    Ash, mango, Medfeb and 5 others like this.
  15. Trish

    Trish Moderator Staff Member

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    I haven't listened to the interview but I have read the recently published book.

    The points Jonathan Edwards raises as problematic in what Hillary Johnson believes about ME are all in the book and I found them problematic too. She seems to have decided to base all her understanding of ME on poorly evidenced theories held by a small minority of ME doctors in the US who don't do high quality research.

    I think this is a great pity, as she could be a good ally and advocate, but instead spreads unfounded beliefs.
     
    Last edited: May 10, 2022
    Grigor, MSEsperanza, Ariel and 15 others like this.
  16. Lou B Lou

    Lou B Lou Senior Member (Voting Rights)

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    "It was thought up as a less misleading term than ME and is as good as most medical term"


    The CFS name was instrumental in portraying ME as just fatigue - chronic fatigue. And still is.
     
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  17. Trish

    Trish Moderator Staff Member

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    We have had endless discussions on naming mainly I think because both names are problematic. Rather than diverting this thread further, best go to this thread to discuss the problems with the names:
    Diagnosis of ME and the use of the labels ME and CFS.
     
    Milo, alktipping, Michelle and 3 others like this.
  18. Mithriel

    Mithriel Senior Member (Voting Rights)

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    This misses the point, it is a look backwards whereas she is writing as someone involved at the time.

    In Incline Village at Lake Tahoe there was an outbreak of an unknown infection which started among teenagers at a school but then spread out to teachers then the wider community. The local doctors were alarmed so they contacted the CDC. At the same time a similar thing was happening in Lyndonville in NY state and the lone doctor there contacted the CDC but he did not receive a reply from them. It is thought that some of the people from the CDC fancied a paid trip to a resort town so they went to Tahoe.

    Because the outbreak started among teenagers the first thought was that this was an outbreak of a particularly virulent EBV so the CDC got Stephen Strauss involved as he his pet theories were about a long term illness he called Chronic EBV Syndrome. The outbreak was never looked at properly. He took biopsies from patients but never published any results or even sent any word back to the local doctors.

    Some doctors contacted him and said this was an outbreak of ME but he wanted this to make his name and refused to entertain the idea. Strauss was a horrible man in ways I won't go into. When tests showed that not all of the patients were positive for EBV he was furious and petulantly changed the definition by replacing EBV with fatigue and renaming it Chronic Fatigue Syndrome. The name may have been felt to be more accurate than ME in the wider world but that was a justification for keeping it not the reason it was used.

    He then went round the US giving lectures on why CFS was something that happened to "women who want someone to open the car door for them" He was particularly awful in his dealings with Hilary Johnson.

    I have no doubt this was leapt upon by the people who wanted ME to be a psychological problem and those who wanted to research fatigue but the idea we are a population who are not seriously ill but just want the benefits of the sick role came directly from the CDC. When money was earmarked for CFS by government but used by the CDC for other things it was justified because they used it to try to help people who were really ill!

    There were no serious attempts to try to find the pathogen in ME especially once they said to wait 6 months before diagnosis. Every promising avenue was closed because there was never any money to do large enough trials. It is beyond frustrating to see another small trial of a "new" theory every 20 years.

    There has been no serious attempt to find out what is biologically affecting people with CFS. There has been a continual downplaying and trivialisation of everything that could have helped us.

    It is always the same and completely understandable that that looking back gives a different narrative than experiencing things as they occur especially when what is common knowledge has been driven by people with an agenda. If you think about the saga of wrenching the trial data from the PACE team you will see what I mean.

    They started with lots of excuses for why they would not release data but after many months of facile excuses they hit upon patient confidentiality which was sheer genius. Suddenly they are the good guys protecting people with CFS. That one of their first arguments was that no one would run trials anymore, so universities would drop in the ratings, so there would be less foreign students so universities would have no money, so civilisation would fall, will be forgotten and just their reasonable argument will be remembered.

    There may be good reasons why this book is not applicable now but the CDC and other official bodies acting properly and in good faith is not among them.
     
    Last edited: May 11, 2022
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  19. rvallee

    rvallee Senior Member (Voting Rights)

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  20. Daisymay

    Daisymay Senior Member (Voting Rights)

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    Very well said Mithriel.

    My memory is that Strauss and co actually stated at the time that they went with the name CFS specifically because they didn't want to give the illness any validity as a physical disease, so it was a name to actively trivialise and done on purpose.
     
    Ash, EzzieD, Simbindi and 10 others like this.

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