Snow Leopard
Senior Member (Voting Rights)
Surprising how different the results were across the other patients vs the one they cherry picked for this "case-study".
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Gravity-induced exercise intervention in an individual with CFS/ME and POTS, 2019, Ballantine, Srassheim, Newton
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Surprising how different the results were across the other patients vs the one they cherry picked for this "case-study".
Tilly
Senior Member (Voting Rights)
So let me get my head around that misquote of astronauts - holding hands or not (wonder if that is what it takes to make them better). They are active in their spaceship with no gravity and their autonomic system is out of kilter when they get back. It takes a year to get find their land legs and their autonomic system used to gravity and they want ME patients to go in anti gravity machines to get their autonomic system working again?In the photograph above (Figure 6) note how the astronauts are in wheelchairs. From their posture you can see that staying upright against gravity is a task in itself. Their muscle, bones, hearts and lungs have all deteriorated without the presence of gravity during their time in space.
Perhaps the researcher should have read this? https://www.nasa.gov/centers/johnson/pdf/584739main_Wings-ch5d-pgs370-407.pdf
Wonko
Senior Member (Voting Rights)
Perhaps we should send all the proponents of anti-gravity therapy to the ISS for several months.
If we can be bothered to pay to bring them back, then immediately upon landing they should be able to function normally.
Lets test to see if a positive mindset, by 'experts' in it, really works, or not.
It may cost a bit, but I'm sure all of us would chip in a fiver each if it would resolve the issue of whether or not a positive mindset and 'trying hard' can overcome one aspect of being chronically ill.
There are, apparently, at least 17 million of us, at a fiver each, when NASA needs money to get to the moon again, not to be sniffed at.
If we can be bothered to pay to bring them back, then immediately upon landing they should be able to function normally.
Lets test to see if a positive mindset, by 'experts' in it, really works, or not.
It may cost a bit, but I'm sure all of us would chip in a fiver each if it would resolve the issue of whether or not a positive mindset and 'trying hard' can overcome one aspect of being chronically ill.
There are, apparently, at least 17 million of us, at a fiver each, when NASA needs money to get to the moon again, not to be sniffed at.
feeb
Senior Member (Voting Rights)
No, no, no, they're not saying we need anti gravity therapy. It's the other way around. The want us M.E. patients to get out of our anti gravity machines. Colloquially, we call anti gravity machines things like "beds", or "chairs", and they make our organs float weightlessly, just like astronauts, and that's very bad for us. So we need to reacquaint ourselves with gravity, using novel scientific techniques, such as "standing up" and "raising our arms".
Dx Revision Watch
Senior Member (Voting Rights)
"At the time of writing, Julia Newton was also Dean of Clinical Medicine, Professor of Ageing and Medicine and Honorary Consultant Physician, CRESTA Fatigue Clinic..."
Sid
Senior Member (Voting Rights)
Another thing I found weird is that one of the interventions was raising arms above the head. I mean, don't many of us do this when washing hair, picking stuff off the shelf in the kitchen etc. many times a month and this does not help. I know that for me this triggers my POTS badly.
Don’t forget tripe
I thought the way we were is the CDC anthem now
When I read the first couple of posts I thought maybe someone should email a link to this thread to this guy. On reflection not sure it would be appreciated as genuine feedback and I realise I have added to the flippancy so apologies for that
rvallee
Senior Member (Voting Rights)
From Figure 6: Weekly activity log at baseline, and at the conclusion of the intervention
Hours active: 41, increased to 46
Hours asleep: 55, decreased to 46. (average # of hours of sleep per day 7.9 hours, declined to 6.6 hours)
Hours sedentary (eg lying on sofa): 72, increased to 76
The paper noted:
Yeah. And she has learned to 'decrease the impact of gravity'when carrying out active tasks (eg use a perching stool when hanging out washing). So it sounds as though the active tasks became more sedentary.
Now, I'm probably giving this paper more analysis than a study of one person who may or may not have ME/CFS with an intervention of one hour of exercise a month warrants. But, if I had to make a conclusion, it looks like the person has managed to achieve a small increase in the number of active hours by increasing the amount of time she rests and by making the active hours less active. And this has resulted in sleep that is now less than the accepted optimum length and is more fragmented.
The authors note that this patient was extremely well supported as she lived at home with her parents.
whatever supercompensation may be. It sounds rather like she collapsed in a heap after the monthly 1 hour of exercise. That suggests that if the activity log had been done in the week following the exercise class, the number of active hours would have decreased from the baseline significantly.
Hmm, so really not replicable then. But, if it didn't work, it wasn't the program's fault.
When you have to change the meaning of words...
rvallee
Senior Member (Voting Rights)
rvallee
Senior Member (Voting Rights)
Groundbreaking stuff. Why they felt this needed an illustration is... puzzling.
Seems almost like a joke that they would call this a "novel" intervention. The chair, such a marvel of technology and ingenuity.
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It's so difficult, isn't it. I have received feedback that we are too harsh on researchers, and in this case, the author is clearly just starting in the field.
But, on the other hand, this error-riddled material, the case study and the dissertation, goes out into the world to unintentionally mislead, as does the author. They will help to support harmful attitudes towards people with ME/CFS. It was the supervisors' job to guide this person to ensure that the work was safe and accurate and that the person learned how to do research. And they have not only failed but lent the unfounded conclusions credibility by adding their name to the author list.
In the face of a relentless stream of poor research, I think satire and flippancy are reasonable responses. Maybe we can also try to engage with Julia Newton to prevent this sort of work coming out of Cresta again?
Snowdrop
Senior Member (Voting Rights)
I have saved the link to the paper on the internet archive.
The paper that is the topic of this thread and has Julia Newton's name attached has been saved for posterity. For as long as the internet lives that silly piece of work will point back to her. I seriously doubt this bothers her much but I thought I'd put it out there.
No doubt all science careers can withstand a few of these stinkers. I hope whatever paper she sign's her name to next has some kind of useful scientific merit.
How is it that well people constantly think they know what's good for the chronically ill that the CI can't figure for themselves. I see this paper (excuse me for bluntness) as gaslighting and patronising. And definitely not science.
Try harder.
It's fine when a well done study reports findings that later turn out not to be substantiated. But this endless dripping of poor quality stuff of variations on the same old theme (always with positive results) has at times left me feeling quite apocalyptic about finding meaningful research in the 'try this therapy' genre.
The paper that is the topic of this thread and has Julia Newton's name attached has been saved for posterity. For as long as the internet lives that silly piece of work will point back to her. I seriously doubt this bothers her much but I thought I'd put it out there.
No doubt all science careers can withstand a few of these stinkers. I hope whatever paper she sign's her name to next has some kind of useful scientific merit.
How is it that well people constantly think they know what's good for the chronically ill that the CI can't figure for themselves. I see this paper (excuse me for bluntness) as gaslighting and patronising. And definitely not science.
Try harder.
It's fine when a well done study reports findings that later turn out not to be substantiated. But this endless dripping of poor quality stuff of variations on the same old theme (always with positive results) has at times left me feeling quite apocalyptic about finding meaningful research in the 'try this therapy' genre.
Ravn
Senior Member (Voting Rights)
Looks like it took a while to get accepted for publication. Maybe at least one reviewer at one point had some concerns?
The wording "had been bedbound" raises the suspicion that this patient was already naturally improving - and likely would have continued improving with or without intervention. Though it was probably lucky the exercise was only once a month or it may have reversed her improvement.
(bolding mine)
So what can we learn from a study showing variable results for 1+6 patients with a fluctuating illness? A few hints: zero, zilch, nada, nothing.
rvallee
Senior Member (Voting Rights)
Have they considered not doing garbage research? That's usually why the criticism is so harsh, and deservedly so. Garbage research needs to be called out. This isn't kindergarten. This is real and it impacts people's lives. Quite frankly I hold on to many [expletives deleted] most of the time and much of the criticism is way too generous given the current disastrous state of affairs, where garbage research has impaired progress and caused harm to millions, fatally so in the worst cases.
This is not an area for participation trophies. Good research gets good feedback. Bad research gets angry feedback. That's the deal. It's a fair deal and the only rational one. Most garbage research is done with complete disregard for patient experience. That's a choice, and a bad one. It needs to be called out and forever will be.
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