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Royal Liverpool and Broadgreen University Hospitals NHS Trust

Discussion in 'General ME/CFS News' started by Barry, May 19, 2018.

  1. Barry

    Barry Senior Member (Voting Rights)

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    @Tom Kindlon posted a link to the following on fb (sorry but I've l lost without trace Tom's original fb post), but thought I'd capture this here, seeing as the Royal Liverpool have been deleting comments people made. Captured this too late for those deleted comments, but in case any more get deleted. Sorry about the cruddy formatting, but could not get it to do better. Wayback Machine would not archive.



    Royal Liverpool and Broadgreen University Hospitals NHS Trust
    Like This Page · 14 May · Edited ·

    Do you deal with chronic fatigue syndrome (CFS/ME) on a daily basis? Aren't sure if you have it? Want to understand more? The CFS team have an awareness day on Thursday 17th May including referrals plus relaxation sessions in the afternoon. All are welcome from 9.30am-2.30pm!

    36 shares
    28 comments
    Comments

    Selina Laurie Most disappointed all comments have been deleted.
    This is ME Awareness month and this centre of clinical excellence is the only hospital for sufferers here in the NW.

    The hospital should be brave enough to be able to leave concerned ME sufferers negative comments about Graded Exercise Therapy GET.
    The ME charities themselves have raised concerns many times about GET so it isn't just ME patients complaining.

    Brendan Búiteach Can you please explain why all comments of people’s poor treatment have been deleted, clearly it’s not only me who has been neglected????

    Marion Barnett The trick in dealing with negative feedback is to deal with it, not to simply delete the comments. I'd still like an explanation of how it is acceptable to doctors to prescribe treatments that have been discredited. Hiding behind NICE to justify prescribing harmful treatments only goes so far. Whatever did happen to ''first do no harm'...oh, wait, I know, you didn't agree with it, so you deleted it.

    Margaret Drysdale Please reinstate all the deleted comments. This is an appalling response to public/ patients views on the ME service offered by this hospital.

    Pennie Malone Us suffers of ME and CFS suffer as much as someone with end stage HIV infections. We are in chronic pre organ failure.

    Your choice to delete the comments saying how bad for us, and even deadly, GET is for us is censorship and you should be ashamed. We have many advocates who will help us take this story of you deleting very valid comments to the local and even national media.

    Brendan Búiteach
    Another poor girl failed by the nhs
    http://www.rochdaleonline.co.uk/.../young-woman-from...

    Alisha Whittam Hi Everyone,
    I am trying to do something to change how we are treated from diagnosis to “ treatment “ in the Northwest .
    As it seems that our views are being dismissed could I ask you to send me a copy at alisha@alishawhittam.com .
    I will then be presenting your views directly to both the clinic and the trust.

    I have Severe ME myself and my treatment was a monthly call .

    After doing so much for The Millions Missing actions this week and getting to hear your stories , I can’t sit back and do nothing .

    I need as many of your stories as possible to make a real impact .

    We will not be ignored !
    Mike Gracia Royal Liverpool and Broadgreen University Hospitals NHS Trust- Do you realise just HOW unethical it is to delete comments from those who suffer from the illness (and their carers?

    People are talking about harm that has been done by the treatments that you're in a way advocating with this advert about the stand.

    It is very, very unethical to delete these comments, as you are then promoting a treatment that is causing harm, and trying to censor those who are trying to explain to you the harm that's caused.

    Mike Gracia A NOTE TO EVERYONE - Consider using the messenger function on this page to send your comments as a message via FB messenger, too.

    Clair Arnaudy As you are a university hospital it would be fantastic to win around the M.E community and educate students and staff alike about M.E by putting on a screening of: https://www.facebook.com/unrestfilm/videos/938259572978443/Manage
    [​IMG]
    Unrest - Official Trailer
    02:20


    1,060,376 Views

    Unrest
    25 July 2017 ·
    UNREST is now available worldwide! Get your digital copy of the film that critics are calling ‘powerful’, ‘extraordinary’, and a ‘stirring call to action.’ WATCH NOW: www.unrest.film/digital

    Alisha Whittam Hi Everyone,

    It was brought to my attention earlier that reviews of our local ME/CFS are being deleted from the Royals FB site .

    I can’t sit back and watch this happen anymore.
    So could I ask you all to get involved with this ...

    I am trying to do something to change how we are treated from diagnosis to “ treatment “ in the Northwest .
    As it seems that our views are being dismissed , could I ask you to send me a copy of how you were treated to me at alisha@alishawhittam.com .

    I will then be presenting your views directly to both the clinic and the trust.

    I have Severe ME myself and my treatment was a monthly call .

    After doing so much for The Millions Missing actions this week and getting to hear your stories , I can’t sit back and do nothing .

    I need as many of your stories as possible to make a real impact .

    We will not be ignored !

    Pennie Malone
    https://m.facebook.com/story.php?story_fbid=1034304153384376&id=656049027876559
    Erica Mogwai Well thanks for showing your bias and deleting the comments from teh patients who have been harmed by the faulty thinking of the psychs and the healthcare servcies who then default to providing CBT and GET and ignoring that it makes sufferers worse.

    I hope that you realise the harm that this brings to an already vunerable group and that you have shown your true face to the public here.

    Margaret Smith Good grief. It's bad enough that the NHS insists on pushing harmful treatments like CBT and GET on patients who have an energy production system that is broken. But to then delete the comments we have made informing you that these treatments make us worse is unforgivable. First do no harm!

    There are now over 10,000 pieces of peer reviewed research that detail the biomedical nature of ME. And precisely ZERO that prove ME is primarily psychological in nature. (Though given this constant sort of treatment by the NHS bodies - ie deleteing/ignoring our feedback - it's hardly surprising we can suffer secondary mental health issues!). Some of this research details mitochondrial dysfunction. CBT and GET do not work on mitochondrial dysfunction. Please don't harm your ME patients further by pushing CBT and GET on them.

    CBT and GET stem from the now thoroughly discredited PACE trial and the US have withdrawn their use for ME patients. Please take our feedback on board.

    Karin Bole “Free gift giveaway”. How about the gift of not tampering with the comments left here?

    Joan Mcparland Censoring the cries of the sick and severely disabled ME patients on this thread is blatant discrimination on a public FB page. Disgusting behaviour from the ‘caring’ profession!

    Amy McRae The toll it takes on ME/CFS patients to do the tiniest things... For anyone to choose to silence them when they used up precious energy they often don't have, risking their health and their lives to speak out against harmful treatment and terrible science that have done and continue to do irreparable damage, is unconscionable.

    Debra Nice Disgusting." discrimination" against the #ME people rights to have a voice to tell the story of harmful effects from Grade Exercise Therapy and CBT . Harmful and shocking to hide #METRUTHSSTORYS we are having are say [​IMG][​IMG] to do "No further harm" is to save life's like children whom don't get believed because of cover up [​IMG] "how dare you take our voices" [​IMG][​IMG][​IMG][​IMG] how unfair and cruel that?

    Justine Guest If ME has been classified by WHO as a neurological condition, why would GET or CBT cure it? How? Do you treat other neurological conditions this way? What does your protocol call for you to do when patients relapse or are made sicker?

    Remember the old days before it was discovered that MS was 'real' and patients were blamed? It would be stupid of a teaching hospital to repeat this mistake... right?

    Listen to patients. Engage with researchers making progress into the biological nature of ME.

    Carly Maryhew Promoting harmful therapies and deleting the comments warning other prospective patients is the perfect recipe for a lawsuit. I hope the individuals involved in censoring reports of negative experiences are looking for a new job soon - in a field where they can't do anyone harm.

    Rebecca Louise The fact that you're deleting our comments is proof that you know you're harming us, but don't want to admit it. Utterly reprehensible.

    Gill Bigglestone You advertise it as an " awareness day" but then when patients make YOU aware of how GET affects this illness, you don't want to be aware any more and censor us. The Liverpool Echo recently reported sensibly on someone with ME. Is there anyone in or near L'pool able to contact them to make them aware of what is happening?

    Charlotte Scase There's a post further up about blood donation, we should all offer ours and see what happens.....

    Harry Nezdechien Helping with awareness for healthcare providers http://www.workwellfoundation.org/.../MECFS-GET-Letter-to...
    Iain Gunga-Din The film is available to watch FOR FREE using the following code "VOICES"https://vimeo.com/ondemand/22513Manage
    [​IMG]
    Watch Voices from the Shadows Online |…

    VIMEO.COM

    Sarah Rake Nice move deleting our comments on the harm caused by NHS treatments for M.E! I'm getting used to being erased by medics.

    Julia Cosgrove It would be interesting to see if PEM or PENIE is on their list of symptoms they are promoting to be experts on. This is the problem...they are NOT experts and know nothing of the illness. There shouldbe a debate on tv of psycho versus biol watched by all medics and see which THEY think is the actual best treatment for ME.

    Leanne Seddon It took me ages and it used up precious limited energy that I have and caused extra pain (headaches etc) writing my experience with GET and how it left me housebound and bedbound half the day which 8 years later I have never recovered from and then to have that message deleted is absolutely disgusting and biased! Should be ashamed [​IMG]
     
    Last edited: May 19, 2018
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  2. Andy

    Andy Committee Member (& Outreach when energy allows)

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  3. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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  4. Inara

    Inara Senior Member (Voting Rights)

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    Wow @Barry, perfect job! Thank you. It's good to see what's going on.
     
  5. James

    James Established Member (Voting Rights)

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  6. Dolphin

    Dolphin Senior Member (Voting Rights)

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  7. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Thank you for getting in touch Emilia Bona. I commented but my comment is still there reproduced on this page. I commented relatively late.

    I wonder if @Tom Kindlon is able to help.
    I also see that someone called Alisha Whittam commented above in the first post asking people who had had their comments deleted to contact her on alisha@alishawhittam.com. Perhaps she received some replies and would be able to help you.

    EDIT: s removed from Bona, and have sent Emilia Bona an email advising her to read here.
     
    Last edited: May 20, 2018
  8. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    I highlighted the issue on my Facebook page .
    I have now highlighted on Twitter that a journalist is looking to people who are affected.
     
  9. Joan Crawford

    Joan Crawford Senior Member (Voting Rights)

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    Hello, Emilia Bona of the Liverpool Echo is seeking screen shots of deleted Facebook posts. Please can you email your evidence directly to her at emilia.bona@reachplc.com
    I'm chair of the Chester MESH. This is local to me. Shocking behaviour to remove critical comments. I have emailed Emilia documents for background and I have many Cheshire patients experience of this clinic over the years. Including going back to the really bad old days of Pauline Powell et al. :-(
     
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  10. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    I have received the following reply to my post from the Royal Liverpool and Broadgreen University hospital. @Joan Crawford of Chester MESH whose members have experience of the hospital has taken up the issue.

    Hi Gill. Thanks again for your message and apologies for the delay in responding, the Facebook page is not manned on the weekends.

    I can understand your frustrations at this. However I assure you that no malice or attempts to silence were intended to those commenting. The post was promoting an event that passed on 17 May, which generated lots of debate (which included some comments which were offensive) about treatment & NICE guidelines but not our service. We responded to many of these comments on Facebook, assuring them that we had taken screenshots of them all to pass to the CFS team to take into consideration and to take up with any of our patients commenting. We will also be reviewing our promotions in the future as we've seen the reaction to the posts and have taken them all in.

    I hope that helps clarify things a little more.

    Thanks again Gill.
    Steve @ the Royal.
     
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  11. AR68

    AR68 Senior Member (Voting Rights)

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    "some comments which were offensive".

    That's open to interpretation. We cannot see these comments so this possibly sounds like propaganda based on previous allegations made by doctors/scientists in this field.

    "Possibly".

    Remember, a noted researcher had to pull back on evidence she gave at a tribunal about such matters.

    Sorry to be a stickler but we need proof. That's not an unreasonable thing to ask for.
     
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  12. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    @AR68
    Please feel free to contact the hospital. I am down for a root canal treatment today so will be inactive.
     
  13. Daisymay

    Daisymay Senior Member (Voting Rights)

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    Good luck Binkie4, hope it all goes as easily as possible.
     
  14. Daisymay

    Daisymay Senior Member (Voting Rights)

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    Well I don't think you are being a stickler, I quite agree. Offensive to them may be just be reasoned disagreeing and posting contrary evidence or experiences, who knows?
     
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  15. Joan Crawford

    Joan Crawford Senior Member (Voting Rights)

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    Hi,
    Emilia Bona of the Liverpool Echo is seeking screen shots of deleted Facebook posts. Please can you email your evidence directly to her at emilia.bona@reachplc.com She really needs this evidence to take forward the story.
    Thanks, Joan x
     
  16. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Liked your post @Binkie4 - thank you for contacting them. Don't think much of the reply though. Also if their system is unmanned at weekends how come posts were being deleted I wonder?

    Best of luck with the root canal. :hug:
     
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  17. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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  18. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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  19. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    I have just been back on to the hospital's fb page where comments have continued to flood in about the deletion of posts. Several have asked for evidence of offensive posts. The discussion taking place is engaged and informed: real people with ME passionately discussing issues. Link below.
    The reply sent to me was also posted generally on the fb page.



    @Invisible Woman @Daisymay -thanks for your kind messages re tooth. Eventually after a lot of dithering, my dentist and I decided not to go ahead today because of my holiday in two weeks. I can't afford a crash. Had to cancel last year's special birthday holiday and spend the previous year's in bed. Many thanks to an understanding dentist. Will be less active here for a while. Rest, rest, rest..........

    @Joan Crawford - good luck with your efforts. Hope the Echo can help. My comment was left alone so have no personal evidence for you.
     
  20. Barry

    Barry Senior Member (Voting Rights)

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    Another capture in case of deletions.
     

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