jaci Mac

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

[jaci Mac @jacislk]

@EDDMorgan3 It’s a grapefruit spoon.

[jaci Mac @jacislk]

@Jamani_Khanyi 15?

[jaci Mac @jacislk]

@amna49854 4

[jaci Mac @jacislk]

It is so wrong that this bill was blocked by the Lords. It deserves a fair open hearing.

[John Slinger MP @JohnSlinger]

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.

👉 https://t.co/vLVBAqr04h

[Smile For ME @SmileForMEUK]

“Thank you so SO much for my smile, honestly had a few tears, I cannot express my gratitude and comfort”

[jaci Mac @jacislk]

@saniyafatma1278 It’s beautiful. Wear it with pride 😃

[jaci Mac @jacislk]

#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. https://t.co/9ys3OjjPGA

[jaci Mac @jacislk]

#ME how much longer do we have to wait for more investment for research and answers to help #PwME?

[Cort Johnson @CortJohnson]

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 https://t.co/WyoejXLxuc

[jaci Mac @jacislk]

#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 😩

[Naomi Whittingham @NaomiWhitt]

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.

[jaci Mac @jacislk]

RECLAMAMOS QUE SE INCREMENTE EL PIB QUE ESPAÑA DEDICA A CUIDADOS HASTA EL 1,5% https://t.co/nAnZK31YI6 via @change_es

[Scott Daniska @scott_scientist]

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.

[jaci Mac @jacislk]

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.

[Claudia Winkleman @ClaudiaWinkle]

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 https://t.co/S3YfUhw28Z #BuildItBeatIt

[jaci Mac @jacislk]

#ME #PEM #fundingNeeded

[MortenGroupOxford @OxMEDiscovery]

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. https://t.co/utgqaUWy2P

[jaci Mac @jacislk]

Salvemos la sanidad pública https://t.co/BcCevWcfF9 via @change_es

[jaci Mac @jacislk]

Increase Tax Threshold and State Pension for Pensioners to Living Wage Amount - Sign the Petition! https://t.co/2K5i9o26Xi via @UKChange

[jaci Mac @jacislk]

Extend Awaab's Law to private tenants to stop more children from dying from damp and mould - Sign the Petition! https://t.co/6hGvnkcJiv via @UKChange

[jaci Mac @jacislk]

@AnilvanderZee Seeing photos from your dance days made me go look back at the last videos of when I had been dancing Rumba on stage. I love to see the dedication the passion,the expression& the joy present then, in those old photos, even with the sadness of knowing it’s no longer possible.

[jaci Mac @jacislk]

@AnilvanderZee Strange that I was excited the moment I read that. 🤷🏼‍♀️ maybe it was the thought of seeing another sufferer and making me realize I am not alone in this battle against #ME

[jaci Mac @jacislk]

@agy_lena Yes, sadly 30+ years on from onset of #ME I have tried every type of cure I can think of including positive thinking & very light graded exercise from bed. .
Nothing like that helps .
You really must rest at the beginning to have any chance of being well again.