Merryn's Legacy

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 understand ing 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


• 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 ❤️❤️

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