Rose Silvester

C

[Tamara C @tamararivc]

After decades of dismissal by doctors, a new NIH study has concluded ME/CFS is a neuroimmune disease. In fact biological abnormalities have shown up in research for decades but been ignored. A brave journalist needs to cover the #GreatestMEdicalScandal #JohnVsJonVsME

[Rose Silvester @RoseSilvester2]

@TheSpinoffTV Thank you @TheSpinoffTV

[Rose Silvester @RoseSilvester2]

@TheSpinoffTV Disappointing lack of balance and twisting of existing evidence in this opinion piece. These programs ignore recent evidence, and best practice guidelines and risk harm by not informing ME patients of risks of eliciting PEM. Take this down @TheSpinoffTV

[Rose Silvester @RoseSilvester2]

@BhupeshPrusty Only 15 minutes? Talk fast!! and know that there are a lot of grateful (and hopeful) people on the edges of their seat.

[Rose Silvester @RoseSilvester2]

@norightturnnz You could ask the MOH Long Covid EAG how they intend to collect that data. They have met once and must be due for another meeting soon.

[Hayley 🏳️‍🌈 @Writagal]

Ngā Kawekawe o Mate Korona | Impacts of COVID-19 in Aotearoa from @mona_jeffreys has some incredibly stark results.
We need to do better. We need LC comms & policy to increase - from workplaces to schools to healthcare.
A united front to support where it’s needed.
#LongCovid2022

[🦋 Living Safely With Covid #CovidIsAirborne @CovidSafeNZ]

Bryan Betty at #longcovid2022 needs to read his audience. Yes, it’s challenging to diagnose Long Covid - this is why we need more research & diagnostic tools - but please don’t say we need less awareness because the worried well are going to get psychosomatic LC symptoms. Fail!

[Rose Silvester @RoseSilvester2]

@tea_then_coffee @LarisaHockey @CovidSafeNZ Martin Chadwick. He convenes the MOH expert advisory group that will get together shortly.

[Rose Silvester @RoseSilvester2]

@MEawareNZ @DrAnnaNZ So grateful for your voice in this discussion @DrAnnaNZ . This hopeful feeling is so unfamiliar…

[Dr Anna Brooks @DrAnnaNZ]

Looking forward to presenting at the #longcovidnz online event tomorrow: Journeying together through the fog: Wed 9:30am-4pm NZT #longcovid2022

@LongCovidNZ
@OtagoWellington
@AucklandUni @ScienceUoA

Program here: https://t.co/t33VznqgWY

Register here: https://t.co/zUXER4zNig

[Rose Silvester @RoseSilvester2]

@LongCovidNZ Some have suggested that there needs to be help for LC from disability services. This is the heart of the issue. DSS in NZ excludes people with chronic health conditions even if 100% disabled. This has to change- recognise long term illness as disability. #MECFS

[Rose Silvester @RoseSilvester2]

@BinitaKane Thank you for acknowledging the ME/CFS community. So many children … so many years lost.

[🦋 Living Safely With Covid #CovidIsAirborne @CovidSafeNZ]

As it should! #VaccinesPlusNZ is the way forward. If you’re a doctor or scientist consider adding your support to this initiative. #CovidIsNotOver

[Rose Silvester @RoseSilvester2]

@AMannanBaig Is there any part of the health system that is geared up to support multi organ conditions ? A whole new model of care needs to be developed that goes beyond treating single organ systems.

[A. Mannan Baig (Ph.D., MBBS) @AMannanBaig]

The difficulty all of us are having to answer this question is a way to gauge the magnitude of the damage it can cause and the reason it is a MULTIORGAN disease and for why Long-COVID symptoms has a such as long list?
This was the real intention of starting this quiz.

[Rose Silvester @RoseSilvester2]

Interesting to see the mix of information as well as misinformation in the NZ Goodfellow unit webinar. Most of it focused on post acute phase - not long covid. Looking forward to this expertise developing. #LongCovid #MECFS #MEawareNZ

[M.E. Awareness NZ @MEawareNZ]

It is overdue time that @minhealthnz followed research about #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Health Related Quality of Life index for #MECFS at 0.47 - the lowest of all major health conditions tested, including MS and stroke.
@NZStuff
https://t.co/otXdM3SHSP

[Rose Silvester @RoseSilvester2]

@mona_jeffreys Thank you for your work on this. Your concerns come as NO surprise to the ME/CFS community in NZ. Medical and social systems have thumbed their noses at this group of patients for decades.

[Rose Silvester @RoseSilvester2]

@DrAnnaNZ @NZDRSUV If you get any families of kids who are ready to consider ME/CFS, direct them to NZcare4ME Facebook group for carers of NZ kids with ME and associated conditions.

[Dr Anna Brooks @DrAnnaNZ]

@NZDRSUV Yep, many post-omicron enrolments for our #longcovid study happening already. Many young, previously healthy, fit. No one is immune to this. It can affect anyone.
#avoidcovid19