Discussion in 'General ME/CFS News' started by Hutan, May 19, 2018.
In case anyone wishes to share on social media:
And another good Herald article by Natalie Akoorie today, yes, two in one day!
This one is open access:
Article continues at link: https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12279670
Both really great articles.
Thanks to everyone involved, especially Natalie Akoorie for sticking with this issue, and Marcel and his family. It must take much bravery and stoicism for Marcel to approach each day. Even so disabled, he's been able to make a really meaningful contribution to ME/CFS advocacy. It was wonderful to hear that Marcel's father has been such a key supporter of the Otago University research team.
Great to see ME Awareness featuring in both articles - this group has definitely stepped up to meet the need for national level advocacy.
M.E. Awareness NZ managed to get a license to reprint this article so it is now available in full and for free on their website.
Good job ME Awareness.
Natalie commented that they had had quite a few people taking out a Herald subscription in order to view the article (they must have some way of tracking) and that that makes a difference. It builds a case for more articles on the topic.
Good article. The drs sound poor in NZ. My downward spiral was very similar. Yet another person harmed by being convinced, wrongly, that the illness was mainly influenced by thoughts , beliefs etc and not understanding how physically sick and vulnerable they are until it’s too late.
Time for an interim update, the campaign remains open until 12 December. This was posted on the Give a Little page a couple of days ago:
Actually stands at NZ$12,780.00 now. Brilliant work M.E. Awareness and Richard
You know you helped craft that statement right @Ravn ? Thanks everyone that gave input.
Drumroll.... there is also another article coming out about the difficulty of getting support from WINZ. Hopefully this week.
now on youtube:
To facilitate sharing:
The presentation itself was a little difficult for me in places, partly because I have an allergic reaction to the word fatigue and get distracted every time I hear it, partly because Eiren talks very fast and uses a lot of technical terms - my processing speed struggles to keep up.
But I did pick up (proteome study, starting at 6:20) that they have new(?) results that fit with Paul Fisher's findings discussed here https://www.s4me.info/threads/an-is...me-cfs-patients-missailidis-et-al-2019.11121/
That's a little bit exciting.
Now we just have to figure out how to keep the team Tate & Sweetman et al funded for next year...
Financial aid hard to access when chronically ill
At some point it'd be really great if people, especially in medicine, stopped using the same tired old trope of people seeking attention and magical benefits of pretending to be sick when it is shown over and over again how it completely defies all common sense, that it's not even worth the trouble for so little on top of being an arduous process.
At this point it's basically a conspiracy theory, yet it is commonly believed and even promoted by many physicians. On practical terms it basically amounts to insanity because only an insane person would continue "pretending" to have any disease that is maligned and dismissed with prejudice, especially when there are much better ones to abuse like depression. "Choosing" any of those diseases, like ME, is like cheating in a way that make it harder. It makes no damn sense.
Good opinion piece on Stuff about the difficulties of having ME and living on the benefit in NZ.
A rise in the benefit is long overdue - I know, because I struggle to survive on it
Carrie Coddington 07:06, Nov 20 2019
Article continues at link:
So impressed with ME Awareness NZ’s work.
The latest Stuff article from Carrie Coddington is especially good: powerful and resonating with a lot of people even here in Aus.
Especially appreciate the media coverage showing the severity and longevity of ME, (avoiding the all-too-common ‘this is not in their heads’ that Australian media coverage tends to give us).
Well done and thank you NZers.
Not always us that have kicked these events off. to be fair.
Most of these have started as individual efforts. But we are learning.
This looks new - a case study for working with me/cfs patients from University of Auckland, Goodfellow unit... written by Dr Vicki Mount, General Practitioner, MBChB, DipPaeds, with expert review by Dr Rosamund Vallings
thoughts? review comments?
A new thread for discussion of the case study is here.
MECFS Canterbury (https://mecfscanterbury.nz/#/) can FINALLY announce that the new CDHB (Canterbury District Health Board) HealthPathway for ME/CFS is live - as of Friday, 29th November 2019! We have been working with the CDHB team over the last year on getting the content improved, so are really pleased it is up now.
'HealthPathways' is an online system that GPs log into to view best-practice advice for assessing and managing a wide range of health conditions and concerns. Each region /DHB in NZ has their own ‘copy’ of the system content, but the base content is provided by Canterbury.
The old 'Chronic Fatigue Syndrome' Pathway has been completely rewritten. The new content is largely based on the information on the US Centers for Disease Control and Prevention site, as this is the most up-to-date and informative of the government sites around the world. (Check out www.cdc.gov/me-cfs/index.html if you haven’t already.) Yes, this means that the diagnostic criteria suggested for GPs to use in their clinical setting is based on the IOM 2015 criteria. Not everyone will agree with that, but it gives a fairly accurate picture of ME - more so than, say, NICE in the UK (not updated since 2007 and still includes GET).
The new ‘Chronic Fatigue’ Pathway will help GPs to assess someone more thoroughly to confirm if they have ME/CFS, idiopathic chronic fatigue or perhaps other conditions that may have different treatment options. It also guides them to support people to manage their activity carefully.
Some key changes;
Separation of ME/CFS from idiopathic chronic fatigue but cover of both
Use of IOM diagnostic criteria for ME/CFS
Removal of recommendations for CBT and GET
Reduced recommendation for trial of antidepressants
Increased supportive advice for GP team management
Increase in discussion of orthostatic symptoms
Removal of out of date NICE and Patient information
Addition of new education material
Full access is only available to health professionals. Unfortunately, we don’t have permission to share the content.
It is likely that GPs and other health professionals will give feedback on the new HealthPathway and we have also asked for a couple more edits. So there may be a bit of fine tuning over the next couple of months (note we don’t have ownership rights, but the team working with us has been receptive when given evidence to back requests up).
Will this advice be available to GPs in other regions?
GPs in other District Health Boards will either see the unlocalised Canterbury pathway, or their local HealthPathways team will need to be encouraged to review /align their local versions. We have been told that Auckland, Nelson/Marlborough and Southern have local versions. And that Hawkes Bay doesn’t use the HealthPathways platform. So, the other regions should be seeing the Canterbury version now.
We are currently considering the best way to highlight this dramatic shift in content to all regions. It could be an email to the local HealthPathway teams from MECFS Canterbury, or perhaps M.E. Awareness NZ, or the regional support groups, or individuals are worth considering too, as DHBs have a legal responsibility to listen to the people in their areas.
With this leading material being brought up to date, we also have the opportunity to ask for other online pages about ME/CFS to be updated. e.g. Health Navigator, Southern Cross
Key changes seem good. I'm very much looking forward to direct acknowledgement that the current recommendations are so flawed that the entire process that lead to their creation needs massive reform as they have caused harm.
But every bit of progress adds up to that moment so this is still very positive, at least unless internal fury succeeds at blocking or watering it down. Truth moves slowly but it grinds down everything in its path.
Is the content not being public information temporary? I don't understand the point of that besides making accountability harder.
New story on Stuff (and I think in the printed The Press today).
Good article and video.
We led this with...
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