Trial By Error: An Australian Exchange with Professor Sharpe

By David Tuller, DrPH

Below is an exchange between members of the Australian ME/CFS community and Professor Michael Sharpe. The open letter from patients and advocates was prompted by a tweet this week from Professor Sharpe that many considered offensive. He has since deleted it. This post includes the initial tweet as well as the open letter and Professor Sharpe’s response.

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On November 3, Professor Michael Sharpe engaged in the following Twitter exchange:

tweet

On November 6, members of the Australian ME/ CFS Community sent Professor Sharpe an open letter expressing their concerns about his tweet. He responded the following day, noting that the tweet had not referenced anyone in particular but that he would delete it “given your feeling of offence, which was not intended.” His full response is included after the open letter.

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Dear Professor Sharpe

Reference:  Your tweet of November 3 that: “…many of the activists trying to have scientific papers they don’t like retracted are not patients. Patients would surely be too ill to produce so many complaints and FOI requests to journals, funders and universities.”

As members of the Australian ME community and their families, many of whom would also identify as activists, we are writing to you in support of a fellow Australian patient, Alem Matthees. This will also be posted as an open letter.

Your tweet makes reference to the work of Alem Matthees, who was successful in his FOI request in the release of data for the PACE trial.

We feel compelled to take issue with your contention that patients could not be producing complaints and FOI requests, as they would be too ill. It is disingenuous and disrespectful to patients and their families, especially to Tom Kindlon and the late Robert Courtney, whose immense contributions despite severe illness we also acknowledge.

Our concern here is for the welfare of Alem Matthees and his family in particular, as well as for the many extremely ill patients who have bravely struggled and risked what is left of their health in order to improve the lot of those living with ME.

We do not seek discussion or explanation. We believe you are aware of the desperate state of health Alem Matthees is enduring. He became completely bedridden in 2016 after submitting the FOI. We simply ask that you acknowledge the deep distress caused by your dismissal of his illness and his heroic efforts in spite of it. We also appeal to your humanity in hoping for an apology.

As Alem Matthee’s mother and full time carer, Helen, has commented on reading your tweet: “I would never mention this to Alem. It would break his heart and mine is already broken when I see my son struggle for survival.”

We would be happy to pass on an apology to Alem’s mother.

Yours sincerely,
Members of the Australian ME/CFS Community

107 Members of the Australian ME/CFS Community (six signatures were added after the letter had already been sent to Professor Sharpe):

Alem Matthees’ family:

Helen Donovan – Mother and full time nurse to Alem – Perth WA
Mya Matthees – Alem’s sister – Sydney NSW
Jim Donovan – Alem’s stepfather – Perth WA
Norm Matthees – Alem’s father – Perth WA
Patricia Matthees – Alem’s stepmother – Perth WA
Edith Wisniewski – Alem’s grandmother – Perth WA
Krys Nicholls – Alem’s aunty – Perth WA
Alex Wisniewski – Alem’s uncle – WA

*****

Susanna Agardy – Melbourne VIC
Mark Anderson
Hilary Anema
Luke Anderson
Sally Andrews
Di Arton – Melbourne – VIC
Christina Gough Barbara – Orange NSW
Jade Barclay – Sydney NSW
Meredith Beale – Brisbane QLD
Marilyn Black – Melbourne VIC
Brittany BK
Julia Bond – Albury NSW
Alex Bradley – VIC
Andrew James Bretherton – VIC
Campbell J Brice
Claire Campbell – SA
Deb Caroll – ACT
Sarah Therese Cartwright
Michael Chainey
Naomi Chainey – VIC
Em Chau – VIC
Jackie Carruthers
Alison Bruhn Clarke – QLD
Sally Coughlan
Penelope Del Fante – Melbourne VIC
John Engel
Elizabeth Edwards
Simon Del Favero – Sydney NSW
Kristy Doggett
Amanda Francie
Nelly Evans
Stella Geez
Helen Gillet
Elsa Gingold
Michelle Goldsworthy – QLD
Claire Gordon – NSW
Iain Gunga-Din – @BenMcNevis
Susan Fairlie Hall – Perth WA
Natalie Hastie
Adinas Henry – Perth WA
Fiona Hime – Sydney NSW
Claudia Heath – Sydney NSW
Sam Heath – Sydney NSW
Kate Herbert – TAS
Ashley Hinds
Simone Eyssens – Melbourne VIC
Sally James – Sydney NSW
Clare Jamieson
Mark Jensen
Wendy Jones
Joy Kelly NSW
Anna Kerr – VIC
Di Kirk
Raine Kornfield
Lake
E Lintunen
Mignon Lurch
Alex Lubansky – Melbourne VIC
Tamara Martin – Sydney NSW
Sandra Mayor – NSW
Peter Mc Clusky
Jenny Meagher – Melbourne VIC
Penelope Jane McMillon – SA
Nicholas Mole
Shiloh Moore
Tina Palladinetti -Sydney NSW
Kellie Phillips – QLD
Chris Pippin – Sydney NSW
Jess Pippin – Sydney NSW
Paul Pippin – Sydney NSW
Karla Pops
Leone Potgieter
Jude Rangitaawa – Melbourne VIC
Anita Roddam
Dorothy Scown
Frances Sedgewick
Litia Silivale – Brisbane QLD
Amity Slocke – Newcastle NSW
Melissa Stainwald – QLD
Sarah Stanton
Kristin Stempf De Vargas
Dee Sunyata
Carla Tee
Jen Temm – Sydney NSW
Michelle Lynette Verall
Adrien Verall
Amy Ward
Shannon Ward
Kate Webb
Gillian Wedding – SA
Ian E Wheeler
Meredith Whitford
Rebecca Lee Williams
Robyn Williams – QLD
Sharon Williams – NSW
Jacqueline Wilson – WA
Kim Wilson
Adrienne Wooding – NSW
Leigh Zhu
Lisa Ziazan

*****

Professor Michael Sharpe’s response:

Thank you for your email.

I had no wish to upset or disrespect anyone with that or indeed any other tweet.

However I think you should please read my tweet carefully. It does not reference any individual. It just makes the point in response to the suggestion that activists are all patients, that many activists, by their own report, are not patients. It also simply states that it would be surprising if very ill people alone, were able to produce the huge volume of complaints and FoI request that deluge the relevant institutions. It did not say that some patients don’t struggle to do this. I have not dismissed anyone’s illness.

But given your feeling of offence, which was not intended, I am happy to delete the tweet.

Kind regards
Michael Sharpe’

{ 23 comments… add one }
  • Helle Rasmussen 8 November 2018, 1:47 pm

    Shame on Michael Sharpe!

  • Natalie young 8 November 2018, 1:54 pm

    to begin with
    the most frightening part about these types
    is fact they have been part of denial of severe human rights issues
    denial of polymicrobial tick borne diseases
    babesia bartonella borrelia etc

    they also have their head so far up their own ego
    that they can’t even see
    people are full of chronic infections
    and are living in a posts septic ongoing septic state
    of multiple infections
    immune suppression
    reactivated viruses

    mould

    what are these people doing ?

    https://www.truthcures.org/

  • Natalie young 8 November 2018, 1:58 pm

    These are the people we need studying us and helping us get well
    we shouldn’t all have to fly USA Germany etc to get treatments to fight to stay alive

    I’m ashamed of my country
    and it’s a sad day when over 7 years of fighting to walk again stay alive move
    that nothing has happened in our country
    Dr Richard schkoffel and Bernie Hudson have stated many of the me Drs patients have borrelia
    and other infections
    in USA France Europe Ireland Asia
    UK the truth is coming out about this illness and Australia is asleep

  • David Tuller 8 November 2018, 2:03 pm

    Professor Sharpe could be referring to me in referencing activists who are not patients. My advocacy or activism is on behalf of good science and against bad science–the kind produced by Professor Sharpe and his friends. That certainly aligns me with patients’ interests and not the interests of Professor Sharpe. But is he also classifying all the scientists and other experts from Harvard, Columbia, Berkeley, Stanford, Galway, UCL, etc. as “activists” for believing that PACE is bad science?

  • Brenda Vreeswijk 8 November 2018, 2:06 pm

    “We also appeal to your humanity in hoping for an apology”, well…don’t hold your breath on that one. He’ll never apologize for any of his actions, he’s got his ego so far stuck up his … it can see daylight.

  • Noreen Murphy 8 November 2018, 2:29 pm

    I had written on Twitter that I thought he was inhumane in that tweet. Actually, I really think Sharpe is a bully and bullying very ill people makes him the worst type of bully, in my opinion. When he is “pulled up” on his tweets, he almost always says that people misunderstood, or misread, his words. He must think we’re idiots!

    I’ve always thought how lacking in empathy, how manipulative and how arrogant the PACE authors and their cronies are and that they appear to have no guilt for the damage they caused and continue to cause. I’ve also thought how strange this is, considering their ‘profession’. The irony of it seems to be lost on them, as I’m pretty sure their profession has a word for it!

    Not that I’m calling them psychopaths but this is an interesting checklist and, hey, if the shoe fits ….

    This checklist identifies the following as the symptoms and signs of psychopathy:

    Superficial charm and glibness.
    Inflated sense of self-worth.
    Constant need for stimulation.
    Lying pathologically.
    Conning others; being manipulative.
    Lack of remorse or guilt.
    Shallow emotions.
    Callousness; lack of empathy.

    1 – 8 in this link: https://www.healthyplace.com/personality-disorders/psychopath/psychopathy-definition-symptoms-signs-and-causes

  • Scott Simpson 8 November 2018, 2:35 pm

    Sharpe’s disingenuousness is pathological.

    It would seem it is impossible for him to express himself to the ME community without being disingenuous.

  • Barry Chamley 8 November 2018, 3:19 pm

    Brilliant letter. Not a wasted word. Very measured and very powerful. Wonderful example of how to compose a good letter.

    MS’ response of “It also simply states that it would be surprising if very ill people alone, were able to produce the huge volume of complaints and FoI request” sounds very much like him trying to mask the clearly evident sarcasm and disdain in that comes across in his original comment: “Patients would surely be too ill to produce so many complaints and FoI requests”.

  • Alison Orr 8 November 2018, 4:06 pm

    Thanks, David, I hadn’t heard about this open letter.

  • Adrienne 8 November 2018, 4:38 pm

    We will always be grateful to Alem for securing the partial release of a portion of the raw PACE trial data. However, lets not forget that the PACE authors and QMUL have refused to release much of the objective data e.g. requests for the exercise tests STEP, VO2 max etc.. have been withheld claiming that only Peter White can “find them” and he has retired so the results of the 5 million pound trial are “lost” forever.

  • Annie 8 November 2018, 5:55 pm

    He has no shame. And where he wrote “It did not say that some patients don’t struggle to do this.” – wasn’t even what people were saying, nice strawman there …

  • Helen Donovan 8 November 2018, 5:56 pm

    I am so grateful to our ME/CFS group in Australia for sending the email to Prof Sharpe, their support in this very difficult time has been unwavering

    Thank you to David Tuller for posting on his Blog, it brings international attention to a very worrying trend towards ME/CFS patients

    When will patients be given the curtesy to have their illness taken seriously!!

  • konijn 8 November 2018, 6:00 pm

    I am a severe ME/cfs patient. I do not have many words and always have to scroll back because I imedialetly forget what I have read. I am so sorry for Salem and whole his family. we have got to protect ourself to not get even worse. Now he is bedridden to after what he did. My feeling is double, I am gratefull for what he did but was it worth that he is now bedridden? I am 98% bedridden for so many years. I even can not count them and am still getting worse. It is hel being bedridden. I really hope that he somehow recovers a little bit. That the strongest and healthy persons fight for us, I am totally grateful. But he lays now day after day, minute after minute, second after second severely ill in bed. And I find it a tragedy because I know how it is. Even with my 2% not in bed you get “nuts” from ilnes and isolation and being locked up. I did not wish him that! Not on such a high price to pay…
    Maybe we can better let the scientists fight for our couse, the healthy ones or the ones who are not so affected.
    And to sharp I have just 1 thing to say: I wich you had ME/CFS/FM/chronic Lyme and all you can imagine for decades like I do.

  • Ross Brodie 8 November 2018, 8:33 pm

    As a UK citizen with ME I apologise for our medical profession. Truth & Science will prevail in the end.

  • Paul Watton 9 November 2018, 8:01 am

    As the author of the original Tweet, I would like to thank everyone who has responded to Prof. Sharpe’s reply.
    I deliberately chose not to do so, because experience has shown that attempting to engage him in reasoned debate is a fruitless exercise.
    However, the large number of comments, which were universally condemning of Prof. Sharpe’s surreal interpretation of the situation (and M.E. patient’s motivations and abilities) were very heartening to read.
    Thank you Australia and thank you again Alem.

  • Lene Christiansen 9 November 2018, 3:04 pm

    Think you made the right decision to delete your comments, mr. Sharpe.

  • Annette Sabiene Wilford 9 November 2018, 3:17 pm

    Mmmmm… typical behaviour of narcassistic tendencies..
    I use the tiny bit of life and brain power to fight this.. as do many patients.. we are ill .. however we still have a soul .. passion and desire for justice.
    Activists.. a tad over the top description of warriors /fighters brave honest decent but unfortunate sufferers of a terrible illness .. with stigma still..
    Sharpe.. and the other bps chronies are bullies of vunerable ill disabled.. but we are neither victims or activists..

  • Janelle 10 November 2018, 2:25 am

    While it’s true there are some “activists” (apparently, people who annoy Michael Sharpe and collaborators by asking for good methodology and evidence) who do not have M.E., that doesn’t negate the fact that Michael said a disrespectful thing, dismissive of the hard work and excruciating effort put forth by many patients.

    Thankful for all the work of my fellow activists, people with M.E. and without M.E. alike.

    Janelle

  • Wendy 11 November 2018, 5:59 am

    Micheal Sharpe regardless of the proportion of patients or not who are actively seeking quality science and evidence based management programs you ignore the fact that your response to FOI requests is to refuse to release the information. The large number of FOI requests is because of the refusal by yourself, other PACE authors, QMUL, and CFS clinics to either release the information held . In the case of the clinics few if any actually bother to collect objective data. It would be appreciated if instead of attempting to gas light patients you would start doing quality work.

  • Natalie young 13 November 2018, 3:38 pm

    thankful for advocates like David

    too many bow to dogmatic fraudelent science

    for example how is it an entire disease process has been ignored for past 20 years in Australia? when in fact borrelia was first founded in 1990s by Michelle wills and professor Richard Barry spirochete isolates taken to USA an showed t willy burgdoferi associate pathologist who confirmed a Lyme like bacteria
    as there is many borrelia species that cause chronic illness and persistence well documented and more evidence emerging on virulence it is actually medical fraud that Australian pathologists have been testing people with wrong tests based on cdc criteria for borrelia USA strain only and denying life saving care to Australian any wonder many of us are fighting for our lives
    and that of our children

    VIROLOGISTS HAVE SHOWN NO INTEREST IN EMERGING POLY MICROBIAL INFECTIOUS DISEASES SUBSEQUENT IMMUNE SUPRRSSION AND FACT WE HAVE SOME OF MOST SEVERE NEUROLOGICAL CASES OF POLYMICROBIAL INFECTION IN THE WORLD

    THESE PEOPLE DEMQND RESPECT BUT ARE NOT PROGRESSING NOT LOOKING DEEPER INTO PATIENYS ILLNESSES LAB WORKS BLOOD SMEARS OFTEN CASES OF BABESIOSIS CHRONIC ARE ONLY PROVEN WHEN ITS TOO LATE AND ON AUTOPSY

    SHAME

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