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.
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For severe ME day, August 8th, mother of the late campaigner Emily Collingridge writes article

Discussion in 'General ME/CFS News' started by K22, Aug 6, 2016.

  1. K22

    K22

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    This was published in latest edition of the 25% group magazine and is available for sharing and awareness. It is a very moving piece & includes a description of the difficulties of Emily's last few months in a UK hospital and the inadequacy of her care. There's also original writing and poetry by Emily Collingridge herself, a great advocate for the severely ill.

    http://www.25megroup.org/Campaignging/Severe ME Day/2016/A Day for Remembrance - Emily.pdf

    Extract
    "
    What was most distressing was that the wonderful and trusted consultant who had looked after her in hospital and at home for six years and therefore knew her well, had read her book and saved her life on more than one occasion, was no longer allowed to look after her. The hospital would give no reason for this except to say that he was not an ME specialist. Nor was the consultant assigned to her. He professed to have some knowledge of ME, but finally was forced to admit that he
    was ignorant of the illness in its severe form – up until then he had thought he was going to cure her. His attitude towards her was arrogant, bullying and rude. He refused to listen to her and to speak to her ME specialist in the community. He allowed her to go without food and vomit three or four times a day for weeks on end with a ‘wait and see’ attitude. When questioned on how long it was safe to go on like this he replied that he didn’t know. He subjected her to treatment com- pletely contra-indicated in ME which made her crash; for ex- ample he refused to let me talk on her behalf, allowed visits from several clinicians at a time, pushed her body with con- stant cannulation and difficult blood tests which wouldn’t have been necessary with a central line (which she would have been prepared to risk) and pressed for procedures when she was not well enough to tolerate them. He talked of rehabilitation despite being shown a letter from an ME champion clinician saying what was appropriate for severe ME. He frightened her by wanting her to see a psychiatrist and when Emily said that she had no confidence in him, he merely answered “well I’m all that you’ve got”. There were many more examples of what seemed to me like abuse. "
     
    Last edited: Aug 6, 2016
  2. Tom Kindlon

    Tom Kindlon Senior Member

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    If anyone wants to retweet it, I tweeted it here:
     
  3. *GG*

    *GG* Senior Member

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    Just breaking this up, don't get how people post large blocks of text, and don't see how impossible it is to read.

    GG
     
  4. taniaaust1

    taniaaust1

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    her story is so horrible with how poorly she was treated and how they didnt allow her own dr who had saved her before to continue treating her so she died with an ME abusive dr and even worst that in England ME patients still get treated like this. Nothing has after this changed.

     
  5. Countrygirl

    Countrygirl ME is not MUS

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    Thank you for posting this article @K22

    You are absolutely right @taniaaust1 I was taken into the main county hospital with malignant hypertension and chest pain recently. The doctor, after telling me that the heart was failing to cope with the persistent very high BP and that I was on the verge of major organ damage, informed me that I would receive 'unkind' treatment there if anyone became aware of my ME diagnosis. He told me that no one believed in it and that it is just a label we doctors give to patients who are mentally ill. Not surprisingly my BP shot up even higher at the threat of abuse from the medical staff. After wondering if he was a fully-paid up member of The Flat Earth Society as well, I insisted on leaving, although they said I was at high risk.

    A few days later, I had very severe chest pain for a prolonged period, malignant hypertension and the full works. I decided not to call an ambulance after my experience in A&E as I felt too ill to cope with it. I took a a large dose of sleeping tablets to knock myself out in the end as it was so prolonged and I really didn't expect to survive this attack. It was preferable to falling back into the hands of the hospital staff and their prejudice against people with ME.

    Nothing has changed here in the UK despite all the losses of the patient community.

    The UK medical profession should be ashamed of itself.
     
    Last edited: Aug 7, 2016
  6. taniaaust1

    taniaaust1

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    I had severe chest pain the other day, actually had incidences of this on two days but refused call an ambulance as I was too scared of being abused due to me ME/CFS status if it turned out to be nothing. (on my mothers side all the family has had heart attacks and my mother who is 17 years older then me has heart issues though she's not overweight etc, I have a heap of added risk factors she hasnt got including high BP spikes and double copy of MTHFR mutation and Im overweight).

    Im putting my life at risk due to how bad how get treated at hospitals. ah sleeping tablets, I wish I thought of that the other day cause I was nearly crying cause the chest pain was so bad. I'll remember that one. Sometimes the thought of dying is better then the thought of facing a hospital and taking a risk with what drs you may get

    One hospital blood test to do with kidneys after a POTS collapse had a hospital dr so concerned that he was very worried I may end up kidney failure... you think findings like this help me get better treatment at times.. nope. (at least they do nowdays give me a drip at the hospital AFTER Ive collapsed if I cant get back up).

    Australia is just like England, at least in some states of it.
     
  7. K22

    K22

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    I'm really sorry for your experience, I too avoid hospital at all cost, sometimes taking risks with my health but I'm sure that's typical for many at the severe end.

    I agree nothing's change but to be honest why should it have? I follow the ME field in the uk very religiously and rarely are the severe even mentioned at meetings such as the forward ME group etc. One quite recent minutes of the Forwsrd ME group (a group of charities headed by the countess of mar which isn't very radical but mainly focuses on benefits & NICE etc and issues that affect the walking wounded with ME) & they actually had a discussion on whether the lack of severe ME inpatient care was something they shou,d work on or not!!! The conclusion of that discussion wasn't printed but appears to be no. The APPG on severe ME was mainly devoted to benefits talk and an NLP researcher giving a lecture on her bespoke severe rehabilitation idea....

    Action for ME had a much hyped symposium on severe ME a couple years back but nothing's happened, I hear they are "working towards" setting up an advocacy service for social care, that's it. The MEA hasn't done much at all for severe ME except the research they funded 13 years back etc but no campaigns on care etc.

    There's no campaigns for the severely ill who are side lined by uk charities but the uk charities aren't really campaigners anyway. This Severe ME day might pass with another message that we are in their thoughts and probably a heart warming story featured of someone bedbound but happy overcoming adversity with a great family... It's a nice reassurance but hardly representative

    The hard issues aren't tackled, aren't publicised and aren't campaigned for.

    Who is lobbying for decent hospital care of the very sick in uk? I don't know anyone Or any group. Where's the hard hitting campaigns showing someone suffering and calling for change? That's why despite these horror stories that we hear every few months, nothing changes.

    It was heartbreaking to read of Emily Collingridges mistreatment and we can only wonder if it contributed to her death. She said the abandonment of the severe must stop. Amen.
     
  8. eastcoast12

    eastcoast12 Senior Member

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    Again, incomprehensible. As a god damn human being how could you treat someone like that. Absolutely criminal
     
    Comet, Jennifer J and Invisible Woman like this.
  9. K22

    K22

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    This isn't isolated bullying though, it's common NHS "care". The rehabilitation narrative and it's just CFS we can cure with graded activity you is pervasive, therefore anyone, however seemingly Ill the patient, can manage this as its not a disease, it's not that serious and so on. The CFS prejudice blinds Drs before they've even met you. Kings hospital is where the Wessely led CFS unit is so no hope of medical expertise there so EC was vulnerable but we all are usually in an NHS without access to good ME specialists .
     
    Last edited: Aug 7, 2016
  10. Little Bluestem

    Little Bluestem Senescent on the Illinois Prairie ❀❤✿Ƹ̵̡Ӝ̵̨̄Ʒ✿❤❀

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    Just to give him the benefit of doubt - maybe he meant to warn you not to tell anyone else about the ME diagnosis.

    I don't think there is much to wonder about. Can doctors be sued in the UK? Someone(s) ought to be sued, in my opinion. Well, actually someone(s) ought to be taken out and horsewhipped, in my opinion. But that is undoubtedly illegal, so sueing would be second best.
     
  11. K22

    K22

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    I think that her mother Said they tried to take action but the hospital closed ranks etc. In the telegraph article the hospital statement was that they cared well for Emily bla bla.
     
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  12. Jemima

    Jemima

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    I read with interest your reply re severely ill , are you in uk? I have bee to hell and back with treatment in uk for twenty five years although i HAVE noticed a major change in attitude in our hospital in last five years. Thank GOD
     
  13. Jemima

    Jemima

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    Ive noticed an improvement in attitude in doctors attitudes in my local hospital in last few years, buGod knows what has elevated it, but thank God for it. because before it was abysmal.
     
    Countrygirl likes this.

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