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/
