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A practical approach to understanding, assessing and managing ME/CFS Dr Cathy Stephenson recently delivered a webinar about...

Thank you so much! It's a while since I read all the guidance all way through, and was in selective reading mode. Or was that 'blinker mode'!?

Apologies if this has been discussed before, but I didn't find it via a search of this thread. Does anyone know why the NICE 2021 guidelines do not include Orthostatic Intolerance, as the IOM 2015 do? Refer Box 2 under...

Hmmm... also worth answering earlier Q 41 & 42 to raise the disparity between ACC having no time limit, and the suggestion that a health condition has 6 month limit.. A sufficient base entitlement period 41 Do you agree with a base insurance entitlement length of six months, plus a four-week...

If anyone is interested and can dive in, the questions in the submission word template that relate to health conditions or disabilities (ref Chapter 8 pg 96-112 in the discussion document) area start on page 10 and are as follows...

I wondered if people are aware of calls for submission on the proposed New Zealand Income Insurance Scheme The scheme proposes cover for up to seven months and includes... "People whose ability to work has been impacted by a health condition or disability would be supported to take the time off...

I am not sure my original comment belongs in this thread that it has been moved to to be honest. I was trying to say that I don't think ANZMES actions increased " the fear people with ME/CFS have of Covid-19 vaccines". I don't believe there is evidence that fear increased, nor that they...

People were already worried before the survey.

It would be interesting to research whether pwME experienced increased fear from hearing that some people believed that they were experiencing severe reactions from the vaccine. Because a lot of people I speak with say the anecdotal survey results helped to reduce the uncertainty, allowing them...

Yeah and I reckon they did with "Please note that this survey is classed as a self-report questionnaire which seeks to ascertain the subjective experience of people with ME/CFS and co-morbid conditions. The information collected is therefore anecdotal data. No clinical research has been...

fyi I am not involved in ANZMES, so not my survey. But in my country. I don't believe ANZMES has every advised its members to not have the vaccine. Rather they shared recommendations that experts considered that "that contracting COVID-19 poses a greater risk to health than the side effects of...

Thought it might be useful to post this related article here https://www.science.org/content/article/rare-cases-coronavirus-vaccines-may-cause-long-covid-symptoms Extracts: Personal accounts: Brianne Dressen's personal story of feeling like she had Long Covid symptoms after getting the...

Moved posts As an organisation with a mandate to support and provide advocacy for pwME, I think it was appropriate for ANZMES to initiate a patient self-report study to highlight that some pwME seem to be having adverse and long-lasting reactions to the vaccine. ANZMES did the study in...

ANZMES are calling for people to join them in advocating for the ME/CFS community Do you know anyone that has skills, time and energy? Anzmes is seeking people who would like to join the committee or perhaps a sub committee. "We are seeking people who will dedicate their time to writing...

Copied post ANZMES are calling for people to join them in advocating for the ME/CFS community Do you know anyone that has skills, time and energy? Anzmes is seeking people who would like to join the committee or perhaps a sub committee. "We are seeking people who will dedicate their time to...

Webinar - A practical approach to ME/CFS (Chronic Fatigue Syndrome) - Wed 23rd Feb 7-8PM Dr Cathy Stephenson presents a webinar next week to share a practical approach to understanding, assessing and managing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The session will cover...

Article by Annabel Hawkins for Ensemble Magazine on her journey with mild Chronic Fatigue Syndrome, published 25th January 2022. Perhaps an unfortunate title "I’m tired all the time" and lack of clarity on diagnostic criteria, but may resonate with the many people that have mild ME/CFS and are...

Anyone got any thoughts on this article "Covid-19 vaccines are probably creating a ‘nocebo effect’" by Dr Siouxsie Wiles (Microbiologist and science communicator. Her specialist areas are infectious diseases and bioluminescence), Bioluminescent Superbugs Lab, Auckland University, New Zealand...

M.E. Awareness NZ has recently published a position statement on alternative therapies, including The Lightning Process and the related The Switch. Happy to receive any feedback. https://m.e.awareness.nz/position-statements

I have heard of several people being assessed or diagnosed with ME/CFS and they and their GP believe that vaccination may have been the cause. In this instance, the Pfzier covid-19 vaccination. Are there any studies that confirm a link between vaccination and ME/CFS, or is it still or...