The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Prof Esther Crawley's paper defines the symptoms of severe ME as PRS

Discussion in 'General ME/CFS News' started by Countrygirl, Jul 12, 2017.

  1. Countrygirl

    Countrygirl I'm with Cheesus

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    I think this is very important.

    For example, I know of a child with severe ME, who was re-diagnosed on EC's advice with PRS. Mum was forbidden access and the child was subjected to a week of in-patient intensive physiotherapy with the result that the child became paralysed and severely ill. The child was then discharged and Bath ignored the child and family's plight by refusing to communicate.

    I do not have access to the full paper below although I have requested it. Perhaps someone here can post it?

    It is interesting to note that EC's description of PRS (Pervasive Refusal Syndrome) is the same as that of severe ME and that she claims that post exertional malaise is a symptom of PRS.

    I think her description of PRS is extremely worrying. Is there any published evidence that PEM is a feature of PRS? Does she make it up as she goes along.......................whilst destroying families?


    https://www.researchgate.net/public...ome_avoiding_the_pitfall_of_a_wrong_diagnosis

     
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  2. Revel

    Revel Senior Member

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    As someone who was in this unfortunate position, not once but twice as a child, the content of this paper literally makes me weep. I wasn't "refusing" anything, I was physically unable to eat, talk, walk, etc.

    I am not a hateful person, but this woman sickens me to the core.
     
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  3. Keela Too

    Keela Too Sally Burch

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    :confused: So trying to steal ME patients to psychiatry?? Sickening
     
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  4. Chrisb

    Chrisb Senior Member

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    "Refusal" is an ambiguous term.

    It may be used to indicate "willing" but "unable": or "able" but "unwilling". In severe cases it may indicate a lack of awareness of any requirement.

    One wonders how EC makes the distinction, and which represents PRS. Or, indeed, whether any such distinction is understood and accepted.

    The danger is that PRS might describe the first option, but be taken to represent the second.
     
  5. Valentijn

    Valentijn WE ARE KINA

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    It seems like it only exists as a poster, and isn't a full paper. The table can be accessed at http://adc.bmj.com/content/99/Suppl_1/A70.2
     
  6. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    This is truly horrific. She is describing very severe ME. How dare she assume these poor sick children have PRS. She is clearly an unfit person to have anything to do with ME in children - or with anything to do with children.

    @Revel I am so sorry to hear you suffered this appalling fate - twice. My heart goes out to you and to all children and families put in this dire situation.

    @charles shepherd, have you and the CMRC tackled Crawley about this? Is there any way the CMRC can be educated about what severe ME is?
     
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  7. Valentijn

    Valentijn WE ARE KINA

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    Based on the data in her table, the only difference is greater disability, fatigue, and pain. There are no statistical differences regarding mental health.

    She really is a severe-ME denialist.
     
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  8. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    For the people who think the alluring Esther Crawley could be innocently confused about what she is doing marketing the neurological disease ME in which you cannot donate blood in the UK as PRS, first you must look back as to what PRS actually is and then observe she and the MRC (who congratulate her on her excellent research into CFS/ME) know precisely what they are doing as they are professionals in every sense of the word.

    Get ready to be shocked comparing Myaglic Encephalomyelitis to the following.....

     
  9. Large Donner

    Large Donner Senior Member

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    Now that is interesting, what exactly is the treatmnt for ME? CBT and GET according to you Esther.

    So lets me guess, the treatment for PRS is biomedical now that would be something. Perhaps its even harsher than CBT and GET... and its just chucking people in swimming pools to see if they sink or swim?

    What exactly is the published evidence for treatments for "PRS"?
     
  10. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    I know Wikipedia is an unreliable source of information, but this section on treatment of PRS is interesting:

    'Treatment ought to involve gentle loving care. The person treating the patient must be very sensitive and tolerant because it takes a long period of time for the patient to get better, and putting pressure on them adds severity to their condition. It frequently takes several months of treatment before it is likely to employ a very steady rehabilitation programme.'
     
  11. lilpink

    lilpink Senior Member

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    "This should ideally be in a child/adolescent psychiatric unit, although a very few children have been successfully treated on a paediatric unit. There are as yet no reports of children with the syndrome being successfully treated as day patients or at home."

    They seem very keen to limit external 'forces' ..ie family , don't they? Very strange how anyone would want to associate with a woman who thinks this is not only acceptable but who actually diagnoses children with this fictitious condition.
     
  12. Large Donner

    Large Donner Senior Member

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    Ah interesting Esther can use that to child catch kids with ME for longer and deny their ME.

    Even that definition of the treatment above should set off alarm bells that the diagnosis itself is problematic, but with doctors being gods these days with their magic spectacles they can just look at people and say whats wrong with them and its always the patients fault if they aren't recovering.
     
  13. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    If I wasn't in the ME world, I wouldn't believe it to be true, that it must be something from the National Enquirer.

    Horrifying that this woman holds the lives of so many people in her fists, squeezing the life out of them.
     
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  14. Large Donner

    Large Donner Senior Member

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    Well people can only be imprisoned so long before you have to send them home worse, unwilling to admit defeat and further harm caused, at the same times forcing judges to put child protection procedures in places in the home like in the case of Karina Hansen.
     
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  15. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    What you say is unquestionably correct, and sensible. However, I'm not sure if it's able to be used as an argument in terms of trying to decipher why a doctor may liken ME to a refusal syndrome of any kind.

    Certainly what we do know, is that PEM in CFS/ME for British psychiatrists is evidence of neurosis (neurotic belief activity causes biological processes leading to symptom exacerbation) and thus a green light for CBT/GET.

    Hence they are likening 'gradual rehab' of PRS with the same treatment for alleged neurotics with CFS who also need gradual rehab. Effectively they are saying they are different illnesses with similar presentations and treatments which then makes you wonder, are PRS and CFS really that different?.... which is where the danger part comes in for patients.

    Similar to as if I presented that before the days of an HIV test, that gay men with AIDS don't have an infection and are in mental distress like those with Anorexia Nervosa, and thus it's best to research AIDS as a mental health condition.

    This is what they've done and continue to do to ME patients. Position them as similar to other mental health conditions. We should be mindful as to who created CBT/GET. It was British psychiatrists, Esther Crawleys's own colleagues!

    CBT to alter the mind, and GET to prove to the allleged neurotic CFS patient there is nothing wrong with them and now they are big and strong again and don't need to be worried about walking, standing and living again.
     
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  16. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Well said.

    You will notice in the UK, an eerie silence when it come to doctors with your enlightened view on the world, a normal view regarding patients who have no voice or defense.

    In the UK, the very people who should speak out, become timid and quite pathetic because if they speak out, they get put in front of a GMC hearing (General Medical Council) and put under watch. Career doctors want their big houses, flash cars and skiing holidays. It's easier that doctors keep their heads down and say nothing.

    Hence we see this bizarre situation that gentleman like yourself can see sense, can see the danger, but as patients, are powerless to act, to help save lives and importantly, protect children's minds as no doubt later on in life, when there are treatments, these kids will be traumatized in adulthood if they get locked in a ward for the crime of having a disease science doesn't understand.

    We all know if we have been bullied at school because of our color, sexuality, body shape that what adults to do us as children (be it mental, physical or sexual) can come back to haunt us years or even decades later. This is my concern regarding what these psychiatrists get up to.

    For every 100 kids they catch in their big net of psychiatry, even if only 30% has genuine ME and 70% of the others really do have mental illness and are helped, then that 30% is too many. Their life may get ruined psychologically later on from misdiagnosis.

    I guess the profit margins are too high though when folk are selling CBT/GET to American insurance companies and socialized medical services, to care about the people they harm.
     
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  17. Revel

    Revel Senior Member

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    Funny you should say that, @Large Donner, as this was part of the "treatment" programme that I went through back in 1980. I didn't have sufficient strength to swim, so I held myself up in the shallow end until I turned blue and the nurses would fish me out. :cautious:
     
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  18. Stewart

    Stewart

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    Can anybody bring this to the attention of the Countess of Mar, to see if it prompts her to follow-up on her recent question about FII?
     
  19. Countrygirl

    Countrygirl I'm with Cheesus

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    Just shocking! :(
     
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  20. slysaint

    slysaint Senior Member

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    And this (EC) is the person the DWP, DoH, MRC,CMRC and NICE regard as an 'expert' on ME.:aghhh:
     
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