I just watched the first 7 minutes of this and thought it was awful. Dr Vallings misdescribed ME fatigue as tiredness, and PEM as feeling more exhausted than normal after activity, Dr Dalziel described OI as feeling worse after being upright all day. Both descriptions massively underplay the seriousness both in terms of symptom severity and loss of function in of PEM and OI. I hope the rest of the video is better. I can't face watching any more. No way would I recommend this. Quotes taken from the transcript linked in Sly Saint's post.
https://www.youtube.com/playlist?list=PLlV7biMCtpYDdldX5H94-cJrEIUAsgzU1 Oh dear. I thought the first episodes were a bit meh but that on balance they would do more good than bad. I so, so, soooo wanted this CME series to be at least ok-ish but unfortunately it got worse. The latest episodes are an almighty muddle of some good bits, a lot of very confusing parts and some seriously unhelpful statements. Friendly reminder of rule #1 for any effective communication and teaching: take account of where your audience is at, what they know and don't know (or think they know but have wrong), and how they're likely to interpret your words and how they're likely to integrate that interpretation into their prior knowledge and beliefs Unfortunately I got carried away when ANZMES first announced this CME series and gave the link to my practice nurse. I just hope she threw it away or quickly gave up listening Sorry to be so harsh, but I'm very disappointed
That video (which I agree is really awful in places) makes me very concerned about who they will have evaluating the research proposals. Does anyone know?I suspect the panel will involve Dr Vallings - she's the doctor who recommends singing in the shower in order to tone up the vagal nerve... I'm not quite sure if she is still the Medical Advisor to ANZMES, but for sure ANZMES think she is an expert on ME/CFS. Unfortunately, a career spent providing medical services to people with ME/CFS does not necessarily equate to having expertise on ME/CFS. I did email Fiona Charlton (President of ANZMES) a while back to see if I might be able to help with anything, including evaluating the research proposals, and inviting her to spend some time on Science for ME. I didn't even get a 'thanks, but no thanks'. Nothing. The video on You Tube allows viewers to say they disliked it, but I don't think numbers of 'thumbs down' are being displayed. Still, they say the feedback is shared with the creator of the video, so it's one way for them to hear us.
4a, midway through. Neuroplasticity. FFS. ETA: 4, Ros Vallings slide at 11:00. Point #1 "Attention to mental wellbeing: music, meditation, yoga" <Head-explode emoji>
Indeed. And this is being suggested to doctors as appropriate things to focus on with their ME/CFS patients. There's a serious disconnect there. Music, meditation and yoga sounds like a pleasant holiday. For people only mildly affected, attention to well-being is much more likely to be negotiating a drastic reduction in work hours and securing other sources of income; convincing your partner and family that you haven't taken leave of your senses; working out how to still be a parent from your bed, becoming reliant on help to parent or coming to terms with not being a parent for now; and so much more. Even for me at the milder end of the scale, a yoga session had me in bed for most of the next couple of days. At the severe end of the scale, suggesting listening to music for mental well-being might be a cruel joke. Yes, I know you've heard all of that before. But so should have Dr Vallings. There's just no excuse. She's earned her living from being a doctor to hundreds of patients and she's received funding for years from ANZMES to speak to patients and doctors, to inform them about managing ME/CFS.
I haven't watched any more of this than in my earlier post when I said this: Judging from what others are saying, it sounds to me like Dr Vallings has been conflating with ME/CFS things like burnout, idiopathic chronic fatigue, mild depression and general exhaustion from trying to do too much. Only if most of your patients don't actually have ME/CFS can you get away with advising adding things like yoga, and talking about PEM as increased fatigue and recommending mind games. I don't think she's alone among so called ME experts on this. The BPS people's descriptions of ME/CFS often sound more like burnout to me, or just general overtiredness. They frequently describe PEM as PEF, and seem to really mean it, spelling it out as things like feeling more tired and achey the next day after exercise. No wonder they think it's something you can push through. Things like sleep hygiene, being allowed to cut back before gradually adding back activities etc may be fine in those cases, but are disastrous for most pwME.
ANZMES video/podcast series: Episode 5 Know ME - Lived and Professional Experience of ME and long COVID with Dr Asad Khan Spoiler: Timestamps 00:00:00 Introduction 00:00:25 Disclaimer 00:00:47 Episode Introduction 00:01:09 Welcome 00:01:26 Tell us about yourself 00:13:40 Strategies for symptom management 00:16:52 Re-infection 00:22:02 Contributing to society 00:22:36 Micro-clots in long COVID 00:30:05 NICE guidelines 00:33:23 When did you know your were transitioning from long COVID to ME? 00:38:48 Prevention 00:40:38 long COVID Kids 00:47:32 Respiratory medicine for long COVID / disordered breathing 00:51:47 Dysautonomia / Vagus Nerve 00:55:06 Sleep hygiene tips for ME and long COVID 01:00:00 Severe ME advice for hospital setting 01:04:09 What do you want health professionals to know about these conditions?
Press Release – ANZMES Awards Academics 25K Grants to Boost ME Research https://anzmes.org.nz/press-release-anzmes-awards-academics-25k-grants-to-boost-me-research/ These look like good projects if done well. I can't recall having come across Dr Bowden before. Dr Hodges has done repeat-CPET studies in the past. Disappointingly there weren't any scholarship applications (4 available for $5,000 each for postgraduate research projects). I wonder what would be a good way to promote these next year?
It will be interesting to see how this progresses each year. I have a concern that the maximum value of an award, NZ$25,000 (€13,834/ST£11,928/US$14,769) may be too small for a lot of biomedical research and a lot of it may go to non-biomedical, questionnaires, etc. research (these can have a value of course). It’s unclear to me on a quick skim what will be measured in the Hodges’ research: will it be like the Physios for ME pilot study which used interesting biomedical measurements?
From last year but don't think this has been posted? https://anzmes.org.nz/national-advi...idance-with-clinician-and-researcher-support/
From an email ANZMES Special General Meeting & AGM on 2 November 2024 Special General Meeting part refers to
This seems worth talking about a bit. ANZMES could choose to be an Incorporated Society, in which case it would continue to be accountable to its members and officers would be elected. It has however chosen to be a Charitable Trust Board. The Trustees choose themselves, and later choose their replacements. Arguably, the existing people in control of ANZMES have been pretty effective at keeping people with new and different ideas about how to run things out even with the structure where committee members were elected. But a Charitable Trust Board structure would formalise that. I believe that ANZMES has significant assets following at least one bequest. The new structure means that the existing people in control of ANZMES will retain control of those assets, and there will be even less effective scrutiny of what they do with them. Multiple Sclerosis New Zealand is an Incorporated Society, not a Charitable Trust Board. While I think it's worth talking about a bit, I suspect that this change is a done deal. There are few paid up members of ANZMES, and most of them will be in favour of the proposal. I imagine that many of them expect to have a seat at the table of the new Charitable Trust Board. I'm interested in what others think about this move. Is there scope to do anything about this, and should we?
I don't know what to think about this Clearly the current structure (Incorporated Society) doesn't work very well, on at least two counts 1) there's low engagement from members and the wider ME community, ANZMES say so themselves 2) I also suspect they're hobbled by clumsy processes like everything having to go through committee and so on. That's just me reading between the lines but in the SGM notice they go into some detail about how the new structure would allow them to work more efficiently So there's definitely cause to consider whether a different structure would be better A Charitable Trust Board would likely address point 2 to some degree, how much I can't tell as I have no insider knowledge of how ANZMES currently functions It's unclear to me how the change in structure would affect point 1, or if that even is a goal What worries me is that it's a general vote on whether to change but unless I misunderstood something the trust deed would only be drawn up after the (yes-) vote so you don't know what you're voting for Trusts can be easier to run than an inc soc because they can better control who's on the trust board. Having the right people with the right skills and who work well together makes all the difference as does the ability to keep bad faith disruptors out But this can turn into a major weakness because it also tends to keep constructive disruptors out, the ones who can stop group think while still being team players. And if a trust board goes badly off track there's very little anyone can do about it unless they're grossly ignoring whatever's in the trust deed - currently unknown - and you're prepared to take the matter to court. In less egregious cases there's still a significant risk of trustees not implementing the 'nothing about us without us' ethos What I'm really disappointed about is that they didn't take the opportunity to review the whole ecosystem of ME organisations in NZ and how ANZMES fits into this to best effect for all concerned. Maybe they did but if so they're not telling
I think a pause on this move to allow for more discussion would be appropriate and any vote should really include a vote on a draft trust deed But, as you say, most likely a fait accompli. The committee said they'll vote for it and if the past is anything to go by few other people will bother to vote at all (including me unless I can unmuddle my thoughts before the postal vote closes) I could be wrong but I doubt they'd be able or prepared to delay the vote now they've sent the paperwork out. Perhaps, if a member were to quickly request an additional motion be added, they could still send that out to the wider membership for a vote. I don't know. Failing that the only other way to force a pause would be to somehow campaign to get people to vote no. But then you'd still have to convince the existing/new committee (doesn't look like there's going to be any change) to prepare a draft for a trust deed and then engage in an open discussion on it In the short term I'd be surprised if a change in organisational structure would change much for the rest of us. In some ways the ANZMES committee is largely operating like a trust board already since the annual elections are mostly a formality In the long term much depends on how carefully the trust deed is written and on a bit of luck with respect to trustee appointments
