Raising ME awareness, ME after fluey virus since 1996, former lecturer, Christian
UK
Joined August 2016
- Tweets47.6K
- Following212
- Followers1.1K
- Likes61.2K
Pinned Tweet
Pushing to exercise can harm #ME patients
unlike other illnesses
We all walk a tightrope
a mistake can be catastrophic
push yourself
stand too long
- risk relapse
for days, months, years or decades ..
even #kidsWithME
Pace self, NOT push
#MEcfs #meawarenesshour #CFS #pwME
Veronica Jones retweeted
I am still on this website waiting patiently for science journalists and grifter docs from prestige med schools to explain how an earlier onset of anaerobiosis at a lower work rate on the second of two maximal exercise tests spaced 24 hours apart constitutes a mental illness. 🙃
Veronica Jones retweeted
Why is a biomarker for ME/CFS important, & why don't we have one yet? On Wed a new project looking for biomarkers will be announced. In preparation, we look at the characteristics that make a good one, & why finding one for ME/CFS could be so crucial - meres.uk/biomarkers
Veronica Jones retweeted
Recruitment of people with #LongCovid (in the UK) for the @DecodeMEstudy remains low.
5000 Long Covid DNA samples could be analysed.
If you have any reach within the UK Long Covid community, please spread the word!
Pls RT: Developed #MEcfs after Long Covid?
Sign up for the world's largest genetic study into ME/CFS. We're now also including up to 5k people who developed the illness after #LongCovid.
Register your interest and you'll be first to know when we launch: decodeme.org.uk/
Veronica Jones retweeted
This clip describes what #pwME might experience running on adrenaline preceding PEM/PESE/PENE.
From a short animation directed by Alexandra Hohner.
Full clip: youtu.be/l1ufdoV5vYY
#MyalgicEncephalomyelitis
#MillionsMissing
#MEAwareness
#MECFS
Veronica Jones retweeted
New Australian research:
Hypothalamus volumes in adolescent #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome: Impact of self-reported fatigue and illness duration
Free preprint:
medrxiv.org/content/10.1101/…
Funded by @MEResearchUK
#MEcfs #CFS #MyalgicE #PwME
ALT Screenshot of abstract
Veronica Jones retweeted
Today is 5 yrs since I became bedridden. It's the last 36hrs of my fundraiser for @Invest_in_ME to mark that time. Thank you so much to anybody who has donated.
#MEcfs #MyalgicEncephalomyelitis
facebook.com/donate/91818371…
Veronica Jones retweeted
Unpaid family carers should be included in this. Caring full time is calculated at 35 hours per week. No concept of what caring full time means in reality.
I was a highly skilled and experienced front line social worker, dedicated to public service & upholding human rights
I'm preparing a longer blog post in response to ONS report re long-term sick...
If you're happy to share, what was your job/profession before you had to give up work or equally if you are still working but had to reduce your hours.
RT for larger sample pls
#pwME #pwLC #LongCovid
Veronica Jones retweeted
Some were never really well enough to carve out a traditional career. #MEAwarenessHour
Asking people about what jobs they have had to leave because of M.E./LC is such an eye-opener and a heartbreaker.
Makes me wonder what we are not seeing too. Who cannot respond or those who have zero-hour contracts and/or no job security
#pwME #pwLC #LongCovid #Longtermsick
Veronica Jones retweeted
Please support the #CountMEin campaign
Today, we have launched a major campaign whose purpose is to reach people living in the UK, Channel Islands, or Isle of Man, who think they might be affected by symptoms – or who have a diagnosis – of #MECFS or #LongCovid
Take the survey here:
meassociation.org.uk/count-m…
#BeCounted #BeHeard #pwME #MyalgicE #MyalgicEncephalomyelitis #pwLongCovid #PostCovid #Campaign #CountMECFS
ALT IMAGE DESCRIPTION: A purple/pink image with a graphic of a stick person writing survey results on a clipboard and it allso has an icon with the words 'Take Survey' The title reads The ME Association: Count ME In with the slogan - Be Counted, Be Heard. The graphic has a person with ME/CFS from our Real ME Campaign (i.e Real People with ME/CFS) and the wording - Myalgic Encephalopathy/Encephalomyelitis, Chronic Fatigue Syndrome (ME/CFS) & Long Covid/Post Covid. The ME Association logo (bottom right)
Charging sick people for being sick would end the NHS as we know it. Don't accept paying for your right to healthcare. Sign the petition here #DontYouDare 38d.gs/72fz
Save the Vanbrugh Park Estate’s front gardens – keep Greenwich green! - Sign the Petition! chng.it/XddFkg7b via @UKChange
Many #pwME have Orthostatic Intolerance -symptoms worsen after standing/sitting upright
Standing still =worse than same time moving about
1 hour at shops - ok next day
1hour at shops including stop+chat - worse next day #PEM
#meawarenesshour #MEcfs #MyalgicEncephalomyelitis
Could you raise awareness by phone frm bbc re longtime sick, unable to work.
meawarenesshour #pwME #MEcfs #MyalgicEncephalomyelitis
Emily Roberts (they/them) | Journalist
UGC Hub, Newsgathering & Investigations – BBC News
BBC Broadcasting House, London W1A 1AA
📧 [email protected]
Veronica Jones retweeted
Hey @capabilitycharl and @shitlawns. I thought plastic was 'no mess' These 2 recent fake turf forum comments would suggest otherwise. 'Sheds bits, heats up and stinks' doesnt quite have same ring to it🤣
Veronica Jones retweeted
I received this answer after posting a message to the BBC responding to their piece about being unable to work due to a long-term viral illness (#MECFS) If anyone feels able to respond it could lead to some useful and truthful publicity. #LongCovid
Veronica Jones retweeted
Medical Matters: A free database you can search using keywords.
Dr Charles Shepherd and the ME Association's other advisers answer questions from our members.
Search the #MedicalMatters here:
meassociation.org.uk/medm
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #LongCovid #PostCovid
Medical Matters - Hyperparathyroidism
Dr Charles Shepherd and the ME Association's other advisers answer questions from our members.
Q: As many symptoms are similar to ME/CFS and Fibromyalgia,
how can healthcare professionals recognise this condition?
A: meassociation.org.uk/medical…
Please also see the ME Association's booklet: Diagnosing of ME/CFS - Importance of Early & Accurate Diagnosis:
meassociation.org.uk/mwta
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis
#Fibromyalgia #Fibro #Hyperparathyroidism
ALT IMAGE DESCRIPTION: A lilac background with an image of Dr Charles Shepherd, Honorary Medical Adviser to the ME Association with a white box with the following question: Hyperparathyroidism: As many symptoms are similar to ME/CFS and Fibromyalgia, how can healthcare professionals recognise this condition? Wording - Please click the link to read the answer in the Medical Matters database. The Medical Matters logo (bottom right)
Veronica Jones retweeted
#MEAction's #BlueSunday2023 donation link⬇️⬇️⬇️
donorbox.org/blue-sunday-202…
More info on joining in the-slow-lane.com/blue-sunda…
#TeaPartyforME2023
#pwME #MECFS
This Post is from an account that no longer exists. Learn more
virology.ws/2023/05/12/trial…
Anil was a professional ballet dancer, now severely affected with ME #MyalgicEncephalomyelitis #MEcfs
Veronica Jones retweeted
Today is #MEAwarenessDay #WorldMEDay. I’ll just say I wish I could
- digest food
- talk & listen for >10s
- tolerate daylight
- wash myself
- sit & stand up, esp to use bathroom & kitchen
- think
- take a walk
Please cure #MECFS. Give the #MillionsMissing #pwME their lives back
ALT Selfie. I’m lying in my bed, in a darkened room, wearing bulky earmuffs (and earplugs), an eye mask and a fleece jacket. I have a nasojejunal feeding tube. I am unshaven.