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Sharing a couple of links... Disability Support Services (DSS) info Landing page that discusses the range of support services https://www.health.govt.nz/your-health/services-and-support/disability-services How the MoH runs the DS https://www.health.govt.nz/our-work/disability-services Am...

Does anyone know the status of the proposed ME/CFS Project Echo that was discussed at the June 2018 Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting? The Project Echo model is... Their website: https://echo.unm.edu/ Example condition partner website...

@Ravn, @Hutan I have started a new thread for this :) And will share in the M.E. Awareness NZ group. https://s4me.info/threads/nz-petition-include-me-cfs-in-dss-disability-support-services-eligibility-criteria.8949/

A conversation in the 'News from New Zealand and the Pacific Islands' thread led to the idea that 'we'* work together on ensuring that people with ME and CFS have access to Disability Support Services (DSS). These conditions are not currently included in the eligibility criteria for DSS, but...

Would you be interested in helping M.E. Awareness NZ to prepare content for an online petition. I see we can create one on https://www.parliament.nz/en/pb/petitions/ that goes to the House of Representatives. Perhaps that is a better option than a letter to MPs? Update: A key focus could be...

Thanks for the feedback on the challenging read. We will try to do better! Yes, if you would take a picture of some shoes for the Millions Missing campaign, and email them in, that would be great. Have you seen the examples of the shoe photos?

Invitation to join M.E. Awareness NZ and our Online MillionsMissingNZ Campaign Hi All, Our invitations… Join our M.E. Awareness NZ closed facebook group Submit your story for our National Online Social Media Campaign for Millions Missing Week May 5th-12th Are you passionate about ME...

We have shared on our M.E. Awareness NZ facebook page.

Just found this 2015 article on NZ Doctor. Sharing to help piece the links together of what the thinking is in various parts of the country. https://www.nzdoctor.co.nz/vault/pearls/exercise-beneficial-chronic-fatigue-syndrome Interesting that the above 'Pearl 465' is not currently listed on...

This worries me, as our local pain clinic believes that the pain of ME/CFS & fibromyalgia is brain handling messages incorrectly. https://www.stuff.co.nz/national/health/111075621/chronic-pain-comes-at-a-huge-financial-and-emotional-cost-but-new-zealand-lacks-an-action-plan "Chronic pain is...

Wendy Matthews in Whitford, Auckland is behind this. Yes, as @Daisybell said, the trust is in it's infancy, but very determined, and is developing strategy, action steps and contacts, etc. I think one of their first initiatives is to provide a meal service. Wendy is a pwME (severe at the...

@Ravn Thanks - I presume it is okay to share it on various networks? Do you think it is okay to use the term "Myalgic Encephalitis"?

Just reporting back. The sponsorship has been accepted by an awesome GP who has some ME/CFS patients, so has some awareness already. She has been able to organise a locum and other details to attend, even at this late stage. Really happy - can you see us beaming?

@SamF Have you seen this thread /research?

The appointments are officially 15 minutes long - which includes the writing up notes time. We are normally there for 20 mins. We go monthly. Most of the items that my daughter raises with the GP are brief. i.e. "I need another script of xyz." Others might be new things we are trying or have...

How did you react to this bit... frank isn't he. "Persons with ME/CFS (PWCs) are admittedly very complex and challenging but eternally grateful for any help that you provide. Many providers find this challenge both fascinating and rewarding, but it may also be time consuming. Many of us who...

I saw this posted on the "ME/CFS-Evolving Science" facebook page... Changes in the transcriptome of circulating immune cells of a New Zealand cohort with myalgic encephalomyelitis/chronic fatigue syndrome Eiren Sweetman, Margaret Ryan, Christina Edgar, Angus MacKay, Rosamund Vallings, Warren...