#ME sufferer for 28 years. #Fibromyalgia. Mother. Global Citizen. Retired to spain. Hablo español.

Joined August 2010
850 Photos and videos
It is so wrong that this bill was blocked by the Lords. It deserves a fair open hearing.
I continue to support the Assisted Dying Bill and hope it will be reintroduced this session. If Parliament can't pass legislation overwhelmingly backed by the British people, to give dignity at end of life, we will have failed as an institution. 👉 express.co.uk/news/politics/…
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jaci Mac retweeted
“Thank you so SO much for my smile, honestly had a few tears, I cannot express my gratitude and comfort”
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#Octopus We need as many people as possible to email the Port Authority of Las Palmas to reject the application to build the world’s first octopus farm. I just did it so please join me and act now. bit.ly/STOPOCTOPUSFARM-
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26 Oct 2024
#ME how much longer do we have to wait for more investment for research and answers to help #PwME?
Something in the Blood in ME/CFS, Fibromyalgia and Long COVID III: Evidence Builds that Something in the Blood is Causing These Diseases #MECFS #longCOVID #FM healthrising.org/blog/2024/1…
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14 Oct 2024
#ME is like trying to recover from multiple marathons and knowing you have another one to run today. There comes a time when the body cannot do anymore 😩
This isn’t a bad piece, and I salute the courage of those who allowed their stories to be told. But headlines matter, given that many people never read beyond them. #ME has nothing whatsoever to do with tiredness. It’s pain and suffering on a scale that most cannot comprehend.
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jaci Mac retweeted
To share my credentials: -8 years of ME/CFS experience -8 years of professional research experience -3 years of research in ME/CFS experience -Approx. 10,000 publications read -Top of my graduate class; ran a genetics department -Thousands of patients personally talked to through forums and phone calls -Produced novel mechanism for ME/CFS & Long COVID, which resulted in remission of Long COVID patient I worked with Yet the NIH does not find me "important enough" for a 3 minute comment in a 3 day meeting. It should not be a surprise to anyone why $1.5 billion in Long COVID research funding yielded no results.  At least I can say I tried to help.
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23 Sep 2024
Yes, I have three wheelchairs two of them electric. The only one I can use is a manual wheelchair which my husband has to push. Outings for me are a rarity and usually to the doctor or the hospital. 22/24 in bed despite an active questing mind. 33 years of M.E. Now severe.
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jaci Mac retweeted
The amazing people at @GreatOrmondSt are building a new Children’s Cancer Centre to transform the care of children with cancer. If you can please donate to @GOSHCharity & help more children like Ralphie have a happy healthy life after cancer gosh.org/donate/the-children… #BuildItBeatIt
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23 Jun 2024
We are looking at funding for a new study on PEM. Pilot study. Clinical study with Cardiovascular Medicine, Oxford Brookes and Poland will link with other molecular projects studying blood. Fingers crossed. jla.nihr.ac.uk/priority-sett…
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12 May 2024
Increase Tax Threshold and State Pension for Pensioners to Living Wage Amount - Sign the Petition! chng.it/WT7F2RSZdy via @UKChange
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9 May 2024
Extend Awaab's Law to private tenants to stop more children from dying from damp and mould - Sign the Petition! chng.it/kvwBjyFg5w via @UKChange
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30 Apr 2024
Wonderful to see photos of you in your dancing years @AnilvanderZee
Today is international day of dance. Because of ME I can't physically really dance anymore but I'm still moving freely in my head. This is me as a ballet teacher in Cinderella by Stijn Celis. I'm not too sure about the hairdo. My assistant is mighty attractive though!!! 😉
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30 Apr 2024
Mandate All Statutory Pay to Meet the Living Wage Standard - Sign the Petition! change.org/p/mandate-all-sta… via @UKChange
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15 Apr 2024
Increase State Pension to Match the Living Wage - Sign the Petition! chng.it/6Qq5hRGd via @UKChange
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27 Mar 2024
MPs must vote on WASPI compensation NOW - Sign the Petition! chng.it/xHTmKTxw via @UKChange
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26 Mar 2024
Replying to @StenHelmfrid
The picture is from an article by Amanda Francey about the situation for #MECFS patients in Australia. amandafrancey.medium.com/aus…
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jaci Mac retweeted
Apologetics for a psychogenic view on #MECFS often dismiss critical voices from patients as a nuisance, as people who should have no say about their own health and accept what “authorities” say—even if the evidence is flawed. They forget the terrible price some voices must pay.
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bbc.co.uk/news/business-6863…. We need to take this seriously, increasing research investment. It is not going to go away or get better. We need to find out why! Chronic conditions like #pwme #covidlong #fibromialgia #MultipleSclerosis #lyme will all play a role.
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