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Dr Ron Davis - Updates on ME/CFS research - September 2019 onwards
- Thread starter John Mac
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Sly Saint
Senior Member (Voting Rights)
so are those who tried to 'get back to normal activities as soon as possible'(
as has been the bps 'medical guidance' for getting over an infection for some time ) all 'type A personality people'?
Recently Trudie Chalder said "the longer people convalesce for at the onset is
associated with some delayed recovery", "when you're in an acute stage of illness
you do need to rest... as soon as you start to feel better that you start engaging in activity again", "to help recovery well we know from work in other types of nasty viruses that the important thing is to get back to activity as soon as possible"
That kind of advice, and the pressure that most people are put under to return to work has little to do with personality. Afaik there is no definitive time period of convalescence for post viral/infection illnesses. People are just expected to get back to work as soon as possible; some are often unable to take time off work in the first place, not because of their personality, but because their employment might be otherwise in jeopardy.
as has been the bps 'medical guidance' for getting over an infection for some time ) all 'type A personality people'?
Recently Trudie Chalder said "the longer people convalesce for at the onset is
associated with some delayed recovery", "when you're in an acute stage of illness
you do need to rest... as soon as you start to feel better that you start engaging in activity again", "to help recovery well we know from work in other types of nasty viruses that the important thing is to get back to activity as soon as possible"
Code:
https://www.youtube.com/watch?v=yHmBOA32-LIThat kind of advice, and the pressure that most people are put under to return to work has little to do with personality. Afaik there is no definitive time period of convalescence for post viral/infection illnesses. People are just expected to get back to work as soon as possible; some are often unable to take time off work in the first place, not because of their personality, but because their employment might be otherwise in jeopardy.
TiredSam
Committee Member
That shows how utterly clueless Turdie Chalder is about ME. That is literally the difference between ME and other illnesses, that building back up again slowly once you start to feel better doesn't work and that you run into a brick wall. We all tried that at the beginning of our illness, we all know it's what you do. And after a few years of trying that we finally work out it's not how ME works, often after ruining what's left of our health trying. FFS.
Jonathan Edwards
Senior Member (Voting Rights)
Not putting out completely baseless and meaningless diagrams might be good too.
This is why it is so important that we are as. critical of the 'biomedical' dogma as of the BPS.
Diagrams with lots of arrows can be very valid if EACH ARROW MEANS SOMETHING VERY SPECIFIC that has been or can be tested for. I remember drawing up one myself with 55 arrows. But when the arrows mean whatever you like, based on gossip amongst clinicians, it is just pointless.
The truth is that although there may turn out to be genetic factors none of us have a clue what they are going to be because all the obvious candidates look pretty negative.
Epigenetic means pretty much nothing in this context.
Allergic and autoimmune look pretty negative from the surveys actually worth looking at.
And so on from top left to bottom right.
Sid
Senior Member (Voting Rights)
Trudie needs to explain why conditioned fear of exercise / standing developed now but not after previous dozens of colds/flus/stressors/whatever the person experienced in their life up to that point. I’ve never met anyone who decided to just take to bed and never get up again after an infection because they got weak and dizzy initially. Literally everyone has experienced this and managed to build back up - including us - until we developed ME/CFS.
Sid
Senior Member (Voting Rights)
Yes. It’s important to remember this is largely a pop psychology / marketing term. It’s not taught in clinical psychology.
Lilas
Senior Member (Voting Rights)
It dismays and saddens me at the same time that even OMF flirts with BPS... Type A personality, no but is that a joke ?! It's not even a reliable concept. And that's what happens when you try too hard to theorize, you drift away from reality. By wanting too much to extrapolate what remains vague and elusive, we come to evade reality to the point of no longer taking into account the real lived context of the disease. As rightly mentioned in previous posts, this type A personality nonsense here eludes all justifiable reasons arising from life circumstances and compelling the persons to do more than they can, quite simply. No discernment here.
And this " negative emotional stress " supposedly leading to global hyperalgesia, sensory amplification, SNS disruption, etc., is pure BPS. Millions of people around the world, for example, experience negative emotional stress and do not end up with global hyperalgesia. In the end, exactly the same hypothetical and unproven “psychological” amalgams that contributed so much to stigmatize pwme.
It's becoming increasingly clear to me that US advocates need to be more than vigilant but offer a calm and rigorous critique to this (It reminds me of what happened earlier this year with the dubious presentation of a certain Dr, invited by the NIH ! if my memory is good, who defended graded exercise for ME...)
And this " negative emotional stress " supposedly leading to global hyperalgesia, sensory amplification, SNS disruption, etc., is pure BPS. Millions of people around the world, for example, experience negative emotional stress and do not end up with global hyperalgesia. In the end, exactly the same hypothetical and unproven “psychological” amalgams that contributed so much to stigmatize pwme.
It's becoming increasingly clear to me that US advocates need to be more than vigilant but offer a calm and rigorous critique to this (It reminds me of what happened earlier this year with the dubious presentation of a certain Dr, invited by the NIH ! if my memory is good, who defended graded exercise for ME...)
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Given that Trudie Chalder "is a Professor of Cognitive Behavioural Psychotherapy*" you'd expect some evidence to support this statement--- OK I'm showing my lack of knowledge --- presumably asking for supporting evidence means that "you don't understand" or some such.
Presumably if you started boiling frogs in the basement of KCL you'd be off the premises pronto --- the same standards don't apply to those proposing unevidenced treatments for people who are ill.
*https://www.kcl.ac.uk/people/professor-trudie-chalder
Exactly.
If ME scientists and clinicians don't start doing actual science we do not have much hope of getting a treatment any time soon.
Recently i was watching a presentation from a renowned scientist on CAR T cells cancer therapy and something he said stuck out to me. They don't know why CAR T cells have a dose response, since they can proliferate up to a hundred million fold (so in theory even a very small dose should be enough and a higher dose shouldn't change the outcome). He said: "I have models (that might explain) but as my colleague already told you, all models are wrong and I'm sure this one will be as well". And this is a field that has been showered with funding for decades, with the most talented people working on it, where they have solid science to work on and things that they know for certain.
In ME we still know nothing. So for Mrs. Dafoe and Whitney to go around saying they are at the point where they almost figured out the puzzle behind closed doors leaves a sour taste in my mouth and I'm sure many others as well because we know it cannot realistically be true.
This narrative they have been pushing for the past 5 years, that "we know so much behind the scenes, all the pieces of the puzzle are coming together" is pretty much snake oil, as much as it pains me to say it. As JE said, each finding needs to be replicated and become established, and only then you can try to make sense of it all. These "theory of everything, putting all the pieces together" diagrams are completely meaningless and a waste of time. The Type-A personality thing is just the cherry on top.
Mrs. Dafoe should be encouraging debate instead of being so defensive at the slightest hint of criticism and praising diagrams with pretty colors. We need to look at what is happening in other areas of medical science, learn from the best, be very critical and really try to be ahead of the curve to have a chance of fast tracking this disease. Creating a safe space where nobody can be held accountable for anything they do or say is not the way science moves forward.
To have a chance we need studies like GWAS [Chris Ponting]
Sadly I have to agree although Fluge and Mella's rituximab trial showed that ME/CFS is
- not a B-cell autoimmune disease, or
- B-cell autoimmune cases are rare.
*https://www.s4me.info/threads/genet...022-hajdarevic-et-al.25070/page-2#post-411468
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Bateman is coauthor in some of the Cortene studies, I don't know the extent of the relationship. I believe she supplied some patients so that may be where some of this stress response narrative is coming from. The diagram does indeed seem quite silly, I think you could create about 100 ones that attempt to look meaningful like that and aren't actually representing any pathology. I note the list of presenters doesn't seem to include anyone knew and a old names like De Meirler that I'm not sure are driving me/cfs research into the future.
To be fair we have not listened to Dr Bateman while she explained her slide. I am not pro-BPS not one bit, but I know that Dr Bateman is an ally. Also I know that OMF does not flirt with BPS and who they invite to share at their meeting does not necessarily represent who they are.
Note that the slide we are talking about has a bracket around anxiety and Type A personality- the optimistic me would like to think that it was previously believed that anxiety and Type A personality was believed to be the cause of ME/CFS.
Dr Bateman is on twitter and might be open to respectful discussion. Who knows she may even want to visit us here.
Mij
Senior Member (Voting Rights)
Giving hope to those who are truly suffering isn't a bad thing, it's the manner in which they are delivering the message that puts me off.
Charles B.
Senior Member (Voting Rights)
I agree regarding delivery. I always put Davis/Dafoe commentary in the following perspective. Above all, we are dealing with a desperate family. Parents who I suspect are approaching, if not already in, their 80s. A son severely impacted by illness who they may never see well. I don’t know that they’re trying to convince us as much as they are themselves. I’m not excusing any unscientific proclamations, but I do think they are less objectionable under the circumstances.
Wilhelmina Jenkins
Senior Member (Voting Rights)
Absolutely true. We are looking at a slide with absolutely no context that was presented at a closed meeting. It was probably a mistake for Bateman to allow it to be posted. Closed meetings are closed for a reason.
Janet gave us context about "Type A personality" in her tweet:
"This is exactly why these meetings are not public. There is absolutely nothing unscientific about hypothesizing that people who are high achievers and work hard and over exert themselves may be at risk for something."
We also know that over 150 scientists where invited to this meeting, so a lot of them probably saw this slide. I find that unacceptable. This does not instill faith in me regarding what goes on in their closed meetings. I'm also very saddened that presentations weren't created for us to watch.
It's possible that others at the meeting pointed our the lack of evidence for personality type in relation to ME/CFS, and indeed the lack of evidence for the whole concept of personality types.
As to whether meetings are open or closed, that's up to those involved. I do get that they can discuss more freely if it's not public.
I am more disappointed when organisations running conferences like IACFSME charge huge amounts for patients/carers to attend online or watch the talks afterwards.
As to whether meetings are open or closed, that's up to those involved. I do get that they can discuss more freely if it's not public.
I am more disappointed when organisations running conferences like IACFSME charge huge amounts for patients/carers to attend online or watch the talks afterwards.
I would much prefer the scientists use their time as they did to talk freely about their work, than do the open talks for patients. I just want them to be productive.
Agree that people on meeting could have called out the personality stuff as wrong. In fact, long Covid is said to effect more people who are of lower socioeconomic status than “type As” which I assume refers to higher income and education in most contexts. This stratifying of patients will hopefully put the Type A stuff to rest. Clearly for most ME patients in the past, it was people with means and health insurance who continued to try and seek medical help.
I think we shouldn’t be criticizing Janet for a tweet she wrote quickly at a conference. She’s just trying to be helpful to patients, and is an elderly caregiver herself. She deserves our respect and understanding.
As for Whitney, he is severely ill and it’s no wonder his father tries to give him hope. If he communicates that — it shouldn’t be referred to as snake oil but taken in context of his situation. He’s also not an official rep of OMF or Ron Davis and they cannot control what he says.
Ron himself is very clear on the scientific process — how slow it is, how replication is necessary, how samples can be contaminated or data misread. He speaks fairly often on all these things which makes me more confident in his plodding along progress.
Agree that people on meeting could have called out the personality stuff as wrong. In fact, long Covid is said to effect more people who are of lower socioeconomic status than “type As” which I assume refers to higher income and education in most contexts. This stratifying of patients will hopefully put the Type A stuff to rest. Clearly for most ME patients in the past, it was people with means and health insurance who continued to try and seek medical help.
I think we shouldn’t be criticizing Janet for a tweet she wrote quickly at a conference. She’s just trying to be helpful to patients, and is an elderly caregiver herself. She deserves our respect and understanding.
As for Whitney, he is severely ill and it’s no wonder his father tries to give him hope. If he communicates that — it shouldn’t be referred to as snake oil but taken in context of his situation. He’s also not an official rep of OMF or Ron Davis and they cannot control what he says.
Ron himself is very clear on the scientific process — how slow it is, how replication is necessary, how samples can be contaminated or data misread. He speaks fairly often on all these things which makes me more confident in his plodding along progress.
