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I had to study both the NZ Counsellors Code of Ethics and the NZ Psychological Society’s Code of Ethics. This article would appear to breach these in three distinct ways. Firstly, the article appears to fail the standard of competence under the principle of “Responsible Caring”. Secondly, there...

I’ve just become aware there is some research happening through Massey Uni regarding the experiences of family and friends of pwME. Lead researcher is Dr Don Baken. I don’t know much about it. I don’t know when the window of data collection will close, etc. I am aware Baken has spoken out about...

Apologies in advance, my mind isn’t all there but submission date is pressing so here goes. I definitely would like the survey to somehow target ME specifically. I think the Solve ME survey does a good job if it could be somehow considered as a basis. Could we also expand the pool a little by...

I spend 2 and a half years studying counselling before switching to psychology. CBT was not my favourite technique but it has uses. I credit CBT for having a role to play in keeping me depression-free for many years despite numerous circumstances any one of which would on its own be an...

@Dx Revision Watch I add my well wishes to those of Trish. Thank you for your years of undertaking this work. Happy retirement! I have no doubt you’ve earned it! :thumbsup:

OMF have only gained in prestige over time. They’ve engaged a growing audience. Patients and caregivers have got bolder in standing together and standing for ourselves. Some members of the media have become more sympathetic. We have an ally right in the CNN. If the NIH shifts the goalposts I...

I am no expert in Lyme but one thing I heard from a daughter of a patient is that Lyme can remain in the body after treatment and re-emerge at any time, like shingles for example. And it needs to be retreated every time. Again this is word-of-mouth knowledge from a patient’s adult daughter. I’d...

This sounds great! I’m so excited there is this information specifically about Norwegian ME warriors. Sounds like they were very blunt. [Edit: grammar! Can I have my old brain back now please!]

Also posting here and on the NZ Awareness group FB page. Partial verbatim transcript of the interview from approximately point 14:05. Merely edited for umms and words in brackets are inserted for clarity. “We’ve had the NIH the National Institute of Health and the Centre for...

https://www.rnz.co.nz/national/programmes/ninetonoon/audio/2018701196/chronic-fatigue-syndrome-blood-test-new-hope-for-sufferers

I woke up this morning to my best friend messaging me about this :) Even just getting the news out there to the public, this is real and this is serious.

Lumpy sore muscles in legs and neck. Referred pain in arms. Here’s what I’ve done to help and depending on causes might help some other people too. I think muscle pain might theoretically be a combination of things such as lactic acid buildup due to ME, inefficient metabolism in muscles due to...

I don’t have a twitter. If someone has the time and energy it would be useful to document on this thread what kind of response has resulted?

Maybe we need to make it sexy. Hmm someone was inviting people to come forward about their experiences with the lightning process. If a media brief found its way into the hands of local newspapers, dr’s offices etc.... “Patients Furious as GPs Conference Teaches Harmful Alternative Practices”. A...

Who is choosing these people as speakers? We actually need materials or something to counter them. I have a friend who thinks this Mel person is the best thing since ever. It may actually have destroyed our friendship.

My local support group just added a link to this https://www.stuff.co.nz/life-style/well-good/teach-me/113482045/the-mystery-and-lifewrecking-result-of-chronic-fatigue-syndrome Appeared from a quick read to do a good job debunking the GET and psychosomatic disorder myths and describing the...

Recommended as a possible helpful treatment by Dr Vallings in NZ. Her idea of it as something a pwME might want to try is based on the discovery of low B12 in the cerebrospinal fluid. And on anecdotal evidence of some but by no means the majority patients having some benefit from injections...

@InitialConditions I have tried B12 injections administered by a nurse. Dr was happy to try it. We tried 1 dose a month for 3 months though I did later learn more frequent doses are recommended for ME. I didn’t have astonishing results. There were many challenges in my life at the same time and...

This is amazing. Instantly shared to my personal Facebook page. I also have some instagram friends who have good reach too.

Just viewed this. Thanks @Andy for setting this up. This is so meaningful to remove the barriers between us and the researchers. :thumbup: