News that the Hodges team at Massey University is still seeking participants for an exercise study - mentioned on this thread: https://www.s4me.info/threads/palme...onal-malaise-in-individuals-with-me-cfs.7341/ Discussion of a completed study by the team is here: https://www.s4me.info/threads/the-t...s-chronic-fatigue-syndrome-2018-nielsen.9800/
Am I the only one who gets the feeling we're all involuntary participants in some sort of weird and never-ending whack-the-mole reality show? According to the Otago Daily Times today it's the turn of back pain. BPS (imported from the UK) is to be taught to physiotherapist students at Otago University. Now, of course there is a place for psycho-social context. When you're trying to figure out why some people don't do the rigorous physio 'homework' you give them it helps greatly to know that they're working 3 jobs to pay off overdue rent and power accounts plus feed the kids and therefore possibly, just possibly, don't have any energy left for exercises when they finally get home. But that's not what the professor interviewed says in this article. Instead he says this: https://www.odt.co.nz/news/dunedin/treatment-broadens-approach-back-pain Oh my, that sounds awfully familiar...
This thing has completely veered off deep into woo territory. What's next, chakras and karma? Tarot diagnosing? Wait, no we're already there. After decades of warning against alternative medicine, the woo behind much of alternative medicine is now turned into a central component of modern medicine. What an idiotic turn of events, one that fails to account for decades of painfully learned lessons.
"Pain is a psychological event"!!!! Not exclusively, and they accuse us of not considering mind and body issues. "Pain: An unpleasant sensation that can range from mild, localized discomfort to agony. Pain has both physical and emotional components. The physical part of painresults from nerve stimulation. Pain may be contained to a discrete area, as in an injury, or it can be more diffuse, as in disorders like fibromyalgia. Definition of Pain - MedicineNet https://www.medicinenet.com/script/main/art.asp?articlekey=4723"
A very frustrating video from the RACP (Royal Australasian College of Physicians) conference held in Auckland in May is discussed here: https://www.s4me.info/threads/video-clip-of-a-new-zealand-conference-on-mus-mentions-me.10006/
For some relief: article written by a GP plus a short video in the Dominion Post/Stuff today, maybe not perfectly perfect but sooooo much better than the RACP stuff: https://www.stuff.co.nz/life-style/...fewrecking-result-of-chronic-fatigue-syndrome
That is a terrific article. The author is Dr Cathy Stephenson and it looks as though she has some connection with WellMe (Wellington patient support group). I'd love to see Dr Stephenson presenting at a conference, perhaps the Royal College of GPs one. If all GPs understood what she has written here, we'd be a long way ahead.
My local support group just added a link to this https://www.stuff.co.nz/life-style/...fewrecking-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 condition quite accurately for a condensed article.
Going from bad to worse: big NZ GP conference happening in Rotorua this week. Speakers include the three we've been discussing here: Chris Kenedi, Kristy Bolter and Megan McEwen. As if that wasn't enough there's also Mel Abbott (Empower, a version of the Lightning process). http://www.gpcme.co.nz/speakers.php Can someone please stop these people, with or without the help of paper circles, just STOP them!!! According to the conference website (http://www.gpcme.co.nz) there'll be another event in Christchurch in August, this one without the first three but with Mel Abbot who has 3 sessions, one of them for nurses (http://www.gpcme.co.nz/south/programme.php). [Posted this in both the "News from New Zealand and the Pacific Islands" and the "Video clip of a Australasian conference on MUS, mentions ME" threads.]
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.
It’s the old ‘marketers trump facts’ in public awareness campaigns. They are getting reach with GPs and nurses because it’s a marketing campaign, funding comes from selling that idea. Whereas we’re just providing information, and not very ‘sexy’ (inspiring) information at that. People say they want answers but really we all want a fix, a cure, a solution. Unfortunately they don’t have to live with the consequences of the (appealing to all including patients) gamble. We do. We have. ...I’m really so horribly sad to think: more pwME will. [edited GPS to GPs]
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 better editor would find an even more sensationalised title. Honestly we wouldn’t even have to get a media outlet to pick up on it. We could write a faux paper ourselves. Done well it would be quite influential at least in getting our perspective across. That last paragraph as a direct quote from a patient would wrap up such an article nicely. Seriously, if a faux paper like this with maybe 3 articles was delivered to the doctors attending and it had enough direct appeal at least some doctors who swallowed this crap might have second thoughts about parroting it without doing their own due diligence (with resources we would point them to). And it might be a considerable embarrassment to the organisers that next time they might consider gauging our perspectives. Is this idea worth pursuing? Are logistics able to be overcome-eg delivery to said GPs? Give me good material and I could write a draft of at least one article. Just noticed the Mel Abbott’s sessions are already full. I’m ready to cry.
Moderator note: Some posts have been moved to the members only area at the request of the poster who started the discussion of a video.
Kathryn Ryan on Radio National (New Zealand) will have an item on Ron Davis and a 'blood test for chronic fatigue syndrome' tomorrow (25 June 2019). The promo made it sound as though it would be an interview with Ron Davis.
It's just finished. Quick response is that there was nothing new there for people who are closely following ME/CFS research apart from Ron's certainty that the nano-needle is a diagnostic tool to indicate that something is wrong. Ron talked about the next step being to make it user friendly and 'closed in' (as in a 'black box' type of thing). And saying that they have 8 other devices in progress but not so far along that will hopefully be able to do specific tests. There was no caveat/caution other than the device hasn't been tested on other illnesses. From an advocacy point of view, it sounded quite convincing. People with little knowledge of CFS are likely to get the idea that this is a biological illness. I have some notes that I'll write up.