Veronica Jones

Raising ME awareness, ME after fluey virus since 1996, former lecturer, Christian

[Veronica Jones @Forestvon]

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 @Forestvon]

@MECFSNews Could do with beds - and coffins too!

[Todd Davenport @sunsopeningband]

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. 🙃

[ME Research UK @MEResearchUK]

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 - https://t.co/um9mxfiBIZ

[Tilman Andris @TilmanAndris]

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!

[Veronica Jones @Forestvon]

@johnthejack Thanks so much John! Sorry missed seeing it. Have had better ones LOL

[Veronica Jones @Forestvon]

@me_awareness Trouble is harmful NICE ME guideline reversed Oct2021 still not implemented so bad advice goes on
NB standing still causes worse #PEM than same time walking
1 hour at shops - ok next day
1 hour at shops including stand+chat -PEM next day
#MEawarenesshour #MEcfs #pwME #LongCovid

[PZ *ME Lobbyist* @pzneedsrest]

This clip describes what #pwME might experience running on adrenaline preceding PEM/PESE/PENE.

From a short animation directed by Alexandra Hohner.

Full clip: https://t.co/YVMw8hwzFI

#MyalgicEncephalomyelitis
#MillionsMissing
#MEAwareness
#MECFS

[Tom Kindlon @TomKindlon]

New Australian research:

Hypothalamus volumes in adolescent #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome: Impact of self-reported fatigue and illness duration

Free preprint:
https://t.co/xArcymVMX8

Funded by @MEResearchUK

#MEcfs #CFS #MyalgicE #PwME

[Paula Knight @Paula_JKnight]

#MEAwarenessHour

[sarah @swastrosarah]

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

[Lisa_Cat @AertbyLisa]

Some were never really well enough to carve out a traditional career. #MEAwarenessHour

[Giada Da Ros @Giada_Da_Ros]

#meawarenesshour

[Veronica Jones @Forestvon]

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 https://t.co/4RZjfWdZ3c

[Veronica Jones @Forestvon]

Save the Vanbrugh Park Estate’s front gardens – keep Greenwich green! - Sign the Petition! https://t.co/XyNkIq0jSb via @UKChange

[Veronica Jones @Forestvon]

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

[Veronica Jones @Forestvon]

Could you raise awareness by phone frm bbc re longtime sick, unable to work.
meawarenesshour #pwME #MEcfs #MyalgicEncephalomyelitis

[Carole Bruce @CaroleBruce17]

@Dan_Wyke Emily Roberts (they/them) | Journalist
UGC Hub, Newsgathering & Investigations – BBC News
BBC Broadcasting House, London W1A 1AA
📧 [email protected]

[🗿📡🌱🫛🚴‍♂️David🏴󠁧󠁢󠁷󠁬󠁳󠁿 @David492111]

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🤣

[Carole Bruce @CaroleBruce17]

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

[ME Association @MEAssociation]

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:

https://t.co/VwuAuTzBOH

#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #LongCovid #PostCovid

[#MEAction Network @MEActNet]

#MEAction's #BlueSunday2023 donation link⬇️⬇️⬇️

https://t.co/eQrHmksTVw

More info on joining in https://t.co/OHcxj3LQFT

#TeaPartyforME2023

#pwME #MECFS