Rose Silvester

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

@TheSpinoffTV Thank you @TheSpinoffTV

On Saturday, we published an article about chronic illness. We stand by the writer and her personal experience is valid, however we acknowledge the response to our approach. We have removed the article and appreciate those who respectfully shared their thoughts. - Madeleine

@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

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

Finally, the most awaited week is here. Stop 1 will be Berlin with 15 minutes of talk covering ME/CFS, long COVID, herpes, autoimmunity, a unique serum protein that usually helps in complement pathway but is not doing its job as it should be, how it ties with Lyme, TLR4, ROS etc.

@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.

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

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!

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

So good to hear the NZ Disability Rights commissioner say at the NZ Long Covid Symposium that Long Covid absolutely fits the definition of Disability. Yes! #LongCovid #longcovid2022 #Disability

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

Fabulous summary from @DrAnnaNZ about immunology and pathology of #longcovid in 10 mins at #longcovid2022, ending with... 1. Post-viral illness is not new. More research is needed. 2. Post-viral illness ARE physiological. 3. Symptom Management can improve quality of life.

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: events.otago.ac.nz/longcovid2022/… Register here: events.otago.ac.nz/longcovid2022/…

@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

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

Also want to shout out to the #MECFS community or anyone who's has suffered post-viral illness. You have endured so much suffering. I'm sorry it has taken #longcovid to open the eyes of (some of) the scientific and medical community. Thank you for your support and help.

After careful consideration, I have decided to go public with this 🧵My daughter Jasmin has had #LongCOVID for the past 16 months. I tried for >6 months to get her research bloods done in the UK. Hitting brick walls, in desperation took her to Germany in Feb. #longcovidkids

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

@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.

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.

QUIZ TIME COVID-19 & LONG-COVID Name an organ or a tissue where SARSCoV2 doesn't enter the host cell?

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

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 journals.plos.org/plosone/articl…

@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.

Some really concerning stats coming out from our #covid study, particularly around inadequate health and social care - but we need more participants to confirm these. If you had COVID-19 before Dec2021 and live in Aotearoa, go to covidaotearoa.com to do online surveys

@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.

@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