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Merryn Crofts - our last family statement

Discussion in 'General Advocacy Discussions' started by Amy101, Aug 25, 2018.

  1. Amy101

    Amy101 Established Member (Voting Rights)

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    Hi,

    I apologise if this is the wrong area to post this but this is our last formal statement as a family. I’m unsure how to get it to come up on here so I have included a link to the Facebook post we have written. I’m a bit useless with technology so I do apologise!

    Many thanks and sending love and gentle hugs from all of our family xxx



    ETA: All below added by forum admin.

    Copy and paste of the text of the Facebook post starts:

    Hello everyone, this is an important but lengthy post, the last post we will be making on MErryn’s Legacy, so please bear with us. For any press or ME charity enquiries, please find our final statement as a family about Merryn in the later parts of the post. Feel free to share this post in any groups and pages etc, as we will now explain why we are closing the MErryn’s Legacy page down (we shall keep this post on the page for a week before we close it down, to give people a good chance to see it).

    Firstly, Merryn wrote in her letter to us (which she told us to open once she had died) that she wanted us to close this page as soon as we felt able to do so. However, we haven’t felt ready to do this until now for various reasons. Merryn was adamant in her letter (bossy as always!) about certain things she wanted us to do. One of the things she wrote was how much she wanted me and Rhys to be happy and go on to have our own little family together – mission accomplished! Another thing she was adamant about was for our wonderful mama Clare to restart creating jewellery again. This was something which Merryn and our mum did together at the start of Merryn’s illness. However, in the final few years of Merryn’s illness, this was something our lovely mum was no longer able to do, or wanted to do. Furthermore, we feel we have achieved everything we currently can (especially with Merryn having ME listed as official cause of death on her death certificate) and just need to take a step back as a family and focus on the above.

    The other reason for this post is that, unfortunately, we feel Merryn’s story is being used by people for their own gain (Please note, this in no way refers to any members of the press and media who we have spoken with or have picked up Merryn’s story, who have truly amazed us with how sensitive they have been regarding Merryn and ME). For example, people are saying they have worked closely with our family since Merryn’s death when they haven’t and are then spreading misinformation about Merryn, and minimising her suffering through their lack of knowledge regarding her symptoms.

    To address this misinformation, here is our final statement about Merryn and what she went through. It would be impossible to give a true understanding of Merryn’s full story as it is so incredibly complex, so we will instead list, in no particular order, her most severe ME symptoms:
    • Bedbound
    • Intestinal failure and a hypersensitive gut which led to her being fed intravenously
    • Severe stomach pain
    • Nerve pain (or neuropathic pain)
    • Body pain including constant burning, itching, crawling, throbbing feeling
    • Unpredictable muscle spasms of limbs, head and body
    • Post Exertional Malaise
    • Painful swelling of hands, feet and face
    • Severe cough
    • Migraine
    • Head pain
    • Ear pain
    • Tinnitus
    • Dizziness
    • Eye pain
    • Visual disturbances
    • Blackouts
    • Loss of proprioception
    • Severe cognitive dysfunction impacting speech, memory, word recall, interpretation, concentration and processing
    • Muscle dysfunction and weakness
    • Nausea and vomiting
    • Periodic paralysis
    • Swallowing difficulties
    • Numbness and pins and needles
    • Loss of temperature control and temperature sensitivity, overheating and shivering
    • Hypersensitivity to noise, light, touch, sound and movement
    • Hypoglycaemia
    • Intolerance to heat and cold
    • POTS
    • Sleep disturbance
    • Urinary and bowel problems requiring catheterisation
    • Breathing problems and air hunger
    • Recurrent infections

    Merryn’s best friend Em wrote the following words on Merryn’s first anniversary, which encapsulate what she suffered so eloquently: “ME stole everything from Merryn, piece by piece. First it took her energy, then her ability to walk or talk, then her dreams of going to college and being a performer, then her ability to go out with her friends or even go outside, her hopes of getting better, growing old or having a family of her own, her ability to sit up, shower, eat, have visitors, to cuddle her family, to tolerate any small amount of light, sound or touch. For years she was confined to lying in her bed in unimaginable pain in the dark. It took the life she once had laid out for her long before it killed her, but somehow it never took her heart.”

    Finally, thank you to all of you who have liked this page, followed Merryn’s story, sent us wonderfully kind messages and comments, shared her story and so on. You have helped our family enormously and we will always remember that. Also, even though this page will be gone, it doesn’t mean we won’t be involved in spreading ME awareness and raising money for ME, as we know this is something Merryn wanted to do but was never able to or well enough to. We will continue to do this throughout the rest of our lives, but running this page and the numerous insensitive and inaccurate comments/messages/things said about us and Merryn from people wrongly claiming to have worked with us, has become increasingly stressful. As a family, we need time to rest and to follow what Merryn wanted us to do.

    We love you all, and so did Merryn. Thank you so much once again – we know that one day the time will come for ME to be taken seriously for the condition it truly is, and we will continue to do what we can to help this happen.

    Love,
    Amy, Clare, Dave, Rhys, baby Flynn and of course, our darling Merryn [​IMG]❤️[​IMG]❤️[​IMG]
     
    Last edited by a moderator: Aug 26, 2018
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  2. Hutan

    Hutan Moderator Staff Member

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    Thank you Amy. It's a good decision, Merryn was very wise and compassionate to give that instruction.

    Thank you to your whole family for what you have done for us. I hope you all can recover and rest from the fight to get ME recognised as the awful life-stealing condition that it is. Your post is lovely and heart-rending in equal measure. :emoji_cry:
     
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  3. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    Many thanks for posting this, Amy. I am sorry to hear about your negative experiences. I have not followed everything that you and your family have done but everything I have seen has been hugely positive, and I am enormously grateful for all your efforts and everything you have achieved. Your whole family has shown tremendous fortitude and are wonderful example to others. I am sad to hear that the page will be closing, but I understand your reasons and I am pleased to hear that you will be continuing to raise awareness and money for research.

    With thanks and very best wishes,

    Rob
     
  4. Barry

    Barry Senior Member (Voting Rights)

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    I really want my MP, Matt Hancock, to see this, so being as the FB page will be closing down, I shall include a link to this thread.

    Edit: Email sent.
     
    Last edited: Aug 25, 2018
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  5. Trish

    Trish Moderator Staff Member

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    Thank you Amy for everything you and your family have done with such grace, dignity and generosity for the ME community.
     
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  6. Amy101

    Amy101 Established Member (Voting Rights)

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    Thank you everyone for your very lovely comments. Barry, this is one of the reasons why I’ve shared it here as it lists the symptoms she found so most difficult and hopefully that will go some way to showing people outside the ME community it is so much more than fatigue. Feel free to use this and any of the news articles about Merryn in any way ❤️
     
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  7. Andy

    Andy Committee Member & Outreach

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    Amy, I'm going to paste the text from the Facebook message below, as once you shut the page down the message itself, which you included in your original post here, will disappear. If I've misunderstood what you intended and want me to remove it then let me know and I will do so.

    ETA: I have now added the text of the Facebook post to Amy's first post in this thread, and deleted it from this post.
     
    Last edited: Aug 26, 2018
  8. Amy101

    Amy101 Established Member (Voting Rights)

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    That makes sense, I’d not even thought of that - honestly, useless with technology! Thank you very much
     
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  9. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Thanks, Amy. You've done so much for our community! <3
     
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  10. Barry

    Barry Senior Member (Voting Rights)

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    @Andy, I'd not twigged that either, and I've just emailed a link to the to the top of this thread to Matt Hancock. Once the FB page disappears will it be possible to include a prominent notice directing visitors to your post #7?

    @Amy101, how would you feel if Andy also included Merryn's picture at the top of his post, as per the FB page? Thinking of Matt Hancock or his team visiting this thread, I think the picture in many ways says as much as the words - a wonderful life lost to ME, a disease that so many people in positions of influence still do not really believe exists. In fairness to Matt Hancock, I do believe he genuinely listened to my wife and I when we attended his surgery, and hopefully gained some insights - in fact he engaged as well as listened. I think a core advocacy goal is to help people gain insights. Edit: Hopefully that does not come across as too pushy, I'd hate to do that. If you'd rather not that will be fine of course.

    It is a very moving statement by the way. I included Em's words as an extract in the email I sent.
     
    Last edited: Aug 25, 2018
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  11. Amy101

    Amy101 Established Member (Voting Rights)

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    Thank you Barry, it sounds like you have a good MP who will hopefully try to do all he can to help. It is absolutely fine to use Merryn’s picture, and any which are used within the media articles about her
     
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  12. Barry

    Barry Senior Member (Voting Rights)

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    Thank you :). @Andy?

    In fact Matt Hancock, as well as being our MP, is now Secretary of State for Health and Social Care.
     
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  13. James Morris-Lent

    James Morris-Lent Senior Member (Voting Rights)

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    @Amy101 :hug:

    Please enjoy your respite.
    My sincere thanks and best wishes to you and your family.
     
  14. Andy

    Andy Committee Member & Outreach

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    I have edited @Amy101 's first post in this thread, adding the text of the Facebook post and then removing it from my post. I thought that would be the most tidy way of doing this.
     
  15. MeSci

    MeSci Senior Member (Voting Rights)

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    I've sent the info to my MP too (Scott Mann).
     
  16. wdb

    wdb Senior Member (Voting Rights)

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  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Last edited: May 5, 2019
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  18. MeSci

    MeSci Senior Member (Voting Rights)

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    Yes, but it's the third photo.
     
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  19. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Excellent article and thanks to the family
     
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  20. Amy101

    Amy101 Established Member (Voting Rights)

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    We had no idea this had been released until a few hours ago and you are all quite right, Merryn is indeed on the right. May I just say we did absolutely stress to the reporter that Merryn is the second with official cause of death but that it has appeared on other death certificates but it doesn’t make that clear in the article! Hopefully it is thought ok otherwise though by the ME community ❤️

    There are a few more things we have done for ME Awareness Week and a production company have been in touch to do a feature length documentary on Merryn. We have met with them and seen their other work which is fantastic and one of the production members who came has ME. After meetings with the BBC and feeling they would offer to take the documentary, they are formally pitching it to them this week with the hope it would be aired on BBC1 at 9pm in 2020. I will keep the site posted with any updates on this.
     

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