The Lived Experience of Severe ME
Call To Action
#Call4Protocol4SevereME
"My GP openly admits to not knowing anything about M.E., yet he also hasn't made an effort to learn. I have Severe ME, going into my 38th year with M.E., and I've still had absolutely no help with it... no matter what GP I've had along the way; it's pathetic really."
CALL TO ACTION
Invitation to take part in putting together and signing an Open Letter to the HSE
ABOUT THE OPEN LETTER
We plan to have completed an Open Letter to the HSE CCO by May 12th 2024 asking for the immediate establishment of a dedicated HSE protocol to address the unique needs of the severely stricken ME patient population.
We would like to include you in our most urgent and crucial ME awareness action during ME Awareness Month 2024.
HOW CAN I BE INVOLVED? WHAT CAN I DO?
We hope that you will:
(i) help us complete the Open Letter to have it ready for International ME Awareness Day 2024, Sunday May 12th;
(ii) sign the completed Open Letter on International ME Awareness Day;
(iii) share the completed Open Letter widely on International ME Awareness Day to bring the issues faced by the Severe ME community to the attention of the wider community, and to get other signatures from concerned patients, carers, advocates and others on behalf of people suffering from Severe ME.
WHAT DO I DO FIRST?
We would like to invite you to help us compose the Open Letter to the CCO.
We wish to include your voice to help us address the gap in knowledge about how to manage & support people with Severe M.E., a gap that results in irreparable harms to those with Severe M.E.
It is important that the HSE recognise the urgent need to address the gap in healthcare provision for those with Severe M.E. and take steps towards the creation of a comprehensive protocol tailored specifically to support individuals with Severe M.E.
Our daily quotes and posts and linked information explain why this Open Letter is important. We ask that you please get in touch with us if you wish to have your particular concerns re the hospital and health practitioner care of Severe ME patients included in our community's Open Letter.
HOW TO GET IN TOUCH
• You can email us at our email address: info@meadvocatesireland.com
• You can send us a private message via the message button on our Facebook page: here
• You can respond below in comments (your comment will be public)
WHAT WE WILL DO NEXT
We will collate all feedback into general points to be included in the community's Open Letter before May 12th. Then we will share the letter on our social media pages on Sunday, May 12th, International ME Awareness Day, so that you can read it, sign it and share with others and ask them to do the same.
DEADLINE
The deadline for sending feedback to us is May 10th. If you would like to have your voice incuded in the Open Letter or if you would like to be the voice that represents those too unwell to get in touch, please send your comment to us before the end of the day on May 10th. We will remind you every day til then.
Thank you for your support.
#Call4Protocol4SevereME
UPDATE
May 12th International ME Awareness Day 12/05/24
Please sign our community’s Open Letter to the HSE here
NB!! Don’t forget to confirm your signature via the email you will receive after signing
Notes
Note to our followers and supporters
As with many worthwhile campaigns we support online we sometimes end up being flooded with unwanted emails.
We are aware that people are receiving some emails following your signature on the ME communities Open Letter. Unfortunately that’s just the way it is with that particular platform which is one of the best available.
Please go to the word ‘unsubscribe’ on the bottom of one of the emails, click on it and the emails will stop.
We are overwhelmed by the support with our Open Letter and send our sincere thanks to you all.
Please keep the campaign going by shareing the Open Letter far and wide on behalf of our ME community.
#Call4Protocol4SevereME
I feel if ME could be recognised like for example RA , rheumatoid arthritis, a first step would be taken to get services and understanding throughout both the medical and general population. I honestly feel that my life is blighted by ME and pain , and it’s a huge struggle to just survive, but the secondary suffering imposed on us by uneducated medics and people who are completely ignorant about ME is an absolute scandal and would not be borne by other disease sufferers. We have to be hugely strong mentally to take terrible and inhumane way we are treated and see humanity beyond all that.
ReplyDeleteThank you for your comprehensive comment, and for going to the trouble and effort to get your thoughts across to us. We hear you and completely agree with what you have said; your line, "but the secondary suffering imposed on us by uneducated medics and people who are completely ignorant about ME is an absolute scandal and would not be borne by other disease sufferers." hits the nail on the head. We hope to use your entire comment anonymously in one of our daily posts during May Awareness Month. We will also include it in the document we will be attaching to the Open Letter we are sending to the HSE's CCO on behalf of the ME and Severe ME community, after May Awareness Month, or when we feel that we have an adequate number of signatures. Thank you.
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