M.E. Awareness NZ

A grassroots collective fighting for health equality & biomedical research for people in NZ with Myalgic Encephalomyelitis. #pwME #MEcfs

[M.E. Awareness NZ @MEawareNZ]

What is a practical approach to understanding, assessing and managing ME/CFS?
Dr Cathy Stephenson provides up-to-date guidance for #MyalgicEncephalomyelitis #ChronicFatigueSyndrome CPD points available
https://t.co/nMf6Df0iqE
@NZDoctor_news @NZMAofficial @RNZCGP @NZResidentDocs

[Tapanui 'Flu | @tapanuiflu.bsky.social @TapanuiFlu]

Hi @iamjohnoliver, my name is Tui.

I’m just a New Zealand bird, waiting for a hero to cover the #GreatestMEdicalScandal.

My Pūteketeke cousins tell me you are the Best Campaign Manager, Ever!

I really meme it! (A thread 🧵 … )

#JohnVsJonVsME

[M.E. Awareness NZ @MEawareNZ]

40 years ago @nzlistener published an article on the mystery epidemic in Otago.
Let's learn from the historical #NewZealand experience of #MyalgicEncephalomyelitis. Support those with #LongCovid who meet the diagnostic criteria for #MECFS.
Read the blog https://t.co/72FoVq4piP

[Tapanui 'Flu | @tapanuiflu.bsky.social @TapanuiFlu]

Today's the 40th Anniversary of a landmark article that stunned #NewZealand & rocked my world. So I'm launching a website, publishing a 40th anniversary digital edition of "M.E Mystery Epidemic" by J. Steincamp, & publishing my first blog! #MyalgicE #PwME #TapanuiFlu Links in🧵

[M.E. Awareness NZ @MEawareNZ]

'The biggest community-driven #MECFS and #LongCOVID conference EVER'.

Expert insights, personal stories, and cutting-edge research.

100% online. Free access. Recordings to follow.

Hosted in central Europe on 15th May to 16th May 2024.
https://t.co/PWkHM8mhCA

[M.E. Awareness NZ @MEawareNZ]

Most people with #LongCovid in New Zealand are struggling to get support and are dealing with it alone. There is no targeted public funding to support them.
This is neglect.
https://t.co/BU61ZypgYA

[M.E. Awareness NZ @MEawareNZ]

Largest global #LongCovid & #MECFS Conference ever.
Expert insights, personal stories, and cutting-edge research.
Free access. 100% online.
Date: 15th-16th of May 2024 9:00 am-7:15 pm (CEST)
https://t.co/PWkHM8mhCA

[UniteToFight @U2Fight_World]

📌 Pinned Tweet 2.0 (meant to be shared)

#UniteToFight2024

Largest global #LongCovid & #MECFS Conference

✅ Free access
✅ 100% online
✅ Inclusive and interactive

📅 Date: 15th-16th of May 2024
9:00 am-7:15 pm (CEST)

More than 35 speakers from all over the world 🌍

More than 20 hours of world class content 🔈

100% community-driven and crowdfunded.

All important links below ⬇️

[Helen Clark @HelenClarkNZ]

As the focus on COVID-19 has waned & the public has largely returned to ‘normal’, many patients & health experts worry that the debilitating burden of #LongCovid is going unacknowledged. Pls join us for a discussion: 3 April, 12pm NZ time. 👇👇
https://t.co/N0Lnx57b5o

[M.E. Awareness NZ @MEawareNZ]

The Royal Commission is undertaking a pandemic response enquiry which closes on 24 March 2024.
If you live with #LongCovid or #MyalgicEncephalomyelitis #ChronicFatigueSyndrome you will have an important story to tell!
https://t.co/oDlStuvGdz

[M.E. Awareness NZ @MEawareNZ]

NZ research - the stark reality: People with #longCovid are too unwell to do their normal activities and report stigmatisation, lack of financial support, and trouble even getting their doctors to take them seriously.

https://t.co/Y3sHTUZ1YP

[Marc Daalder 😷 Wear a Mask @marcdaalder]

This was a heartbreaking story to work on: New data from reveals the crushing burden of Long Covid in NZ.

Reading testimonies is like reading obituaries. LC patients describe their lives in the past tense, because the lives they used to have are now gone.
https://t.co/iIWLr66LXf

[M.E. Awareness NZ @MEawareNZ]

We may be sick of hearing about Covid.

But many are literally sick of Covid. It isn't over for them.

Please continue to protect yourself and those around you.

#chronicillness #longCovid #meCFS
https://t.co/07kQewQWV6

[Deanne @NzDeanne]

3/n I ask in good faith as a mother of an 18-year-old diagnosed with MECFS at 13, who deteriorated to severe. The harder he pushed the worse he became. Now we pace, treat symptoms & hope he does not decline further to Very Severe, which looks like this.
https://t.co/XNqV02ciMz

[Deanne @NzDeanne]

2/n Goodfellow Unit’s Medcase for #MECFS now promotes treatments GET, CBT & Lightning Process - explicitly warned against in international best practice guidelines from NICE, NIH, CDC & Mayo Clinic. If it is not removed urgently people will be harmed.
https://t.co/epDSCR8dFG

[Deanne @NzDeanne]

1/n @minhealthnz @drayeshaverrall @priyancanzlp @RNZCGP @ACCNZ @FMHS_UoA @HRCNewZealand @NZPsS @AmandaKvalsvig @smcnz
Kia ora. Who in NZ is legally accountable for serious harm caused to patients resulting from inappropriate medical training information?

[M.E. Awareness NZ @MEawareNZ]

@cath_nz @minhealthnz @RNZCGP endorses the Goodfellow Unit at @AucklandUni to provide quality education. This Medcase should not be recommending therapies that can cause harm.
Response being prepared.

[ME Association @MEAssociation]

Information on ME/CFS for GPs in New Zealand - Definitely not recommended
The information and guidance in this training module for GPs in New Zealand on the treatment of ME/CFS is really awful
Not only does it state that the recommendations in UK NICE guideline have been 'severely discredited by world experts in the condition', it goes on to recommend graded exercise therapy (GET) and the Lightning Process (for children age 12 to 18) and claims that pacing 'has not been shown to be effective'!

If a doctor here in the UK were to prescribe two specific treatments that were not recommended by NICE, and a patient then suffered harm as a result, the doctor could then face legal consequences
However, the UK NICE guideline recommendations do not form part of official guidance on ME/CFS in New Zealand

I hope that the New Zealand ME/CFS charities will call for the immediate withdrawal of this learning module
The MEA would be willing to support any such action
Dr Charles Shepherd
Hon Medical Adviser, MEA
https://t.co/hrsJHs5PIx

[M.E. Awareness NZ @MEawareNZ]

People with ME/CFS have a broken energy system and report becoming sicker after graded exercise therapy.

Please sign this petition asking @CochraneLibrary to remove the harmful Exercise Therapy for ME/CFS study.
@cochrane_nz
https://t.co/L4iBY2xiOY

[Long Covid Kids New Zealand @LCKNewZealand]

We need to protect our children's futures - without their health the future looks grim.

[M.E. Awareness NZ @MEawareNZ]

Whose responsibility is it to provide clinical and practical support that might make a difference for people with #LongCOVID and #ChronicFatigueSyndrome who are too unwell to work, study or socialise?

Seems like it should be the #nzhealthsystem right?

[Newsroom @NewsroomNZ]

New Zealand may have 100,000-150,000 people affected by Long Covid and ME, and of those, 85 percent will be moderately to very severely affected and needing significant support, says Emeritus Professor Warren Tate https://t.co/Nsbd8ZJgSE

[M.E. Awareness NZ @MEawareNZ]

Call to action to politicians and Te Whatu Ora from Prof Tate, Biochemist...
It's overdue time to ensure that the health restructure puts support in place for people with #MECFS #ChronicFatigueSyndrome and #LongCovid.
https://t.co/rvH8UIzq6Z