adreno
PR activist
- Messages
- 4,841
I hope attitudes are changing in The Netherlands!
-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Science Media Centre expert reaction to Journal of Health Psychology’s Special Issue on The PACE Tri
- Thread starter Yogi
- Start date
- Messages
- 48
- Location
- The Netherlands
Yesterday, I had a discussion with Alan Carson, neuropsychiatrist and PACE-defender, on Twitter. He stated that CFS was a condition problem. I asked him for proof. He did not come up with a relevant answer
https://twitter.com/LouCorsius/status/892653414173245444
https://twitter.com/LouCorsius/status/892720556763734016
https://twitter.com/LouCorsius/status/892721659299475457
https://twitter.com/LouCorsius/status/892723315416199169
https://twitter.com/LouCorsius/status/892723462980218880
https://twitter.com/LouCorsius/status/892653414173245444
https://twitter.com/LouCorsius/status/892720556763734016
https://twitter.com/LouCorsius/status/892721659299475457
https://twitter.com/LouCorsius/status/892723315416199169
https://twitter.com/LouCorsius/status/892723462980218880
boombachi
Senior Member
- Messages
- 392
- Location
- Hampshire, UK
@Lou Corsius can you tell us if he is open to the criticism or dismisses it. I tried to google translate the page but google translate doesn't seem to grasp the difference in how the Dutch and English express themselves.
- Messages
- 48
- Location
- The Netherlands
He is very open to criticism. He has asked his colleagues to be careful. He calls it the (in)famous PACE-trial. His point of view may help to influence the Dutch official point of view
A.B.
Senior Member
- Messages
- 3,780
No wonder he is defending PACE and CBT/GET. He thought that this paper
https://academic.oup.com/brain/arti...rease-in-prefrontal-cortical-volume-following is evidence that CBT changes the brain in CFS. The authors present the results as evidence for such but with a little critical thinking the claim immediately falls apart.
How can these professionals be so shockingly incompetent?
Last edited:
MeSci
ME/CFS since 1995; activity level 6?
- Messages
- 8,231
- Location
- Cornwall, UK
and he can't even spell 'Rigor'. (Unless that is someone else's error)
adreno
PR activist
- Messages
- 4,841
Because promotion up the system isn't based on merits, but rather how congruent their behavior is with establishment views.
Jonathan Edwards
"Gibberish"
- Messages
- 5,256
Did he express a view. All I saw was a mention of the issue. I cannot manage the Dutch.
Jonathan Edwards
"Gibberish"
- Messages
- 5,256
It could be a pun - the death of rigour.
- Messages
- 48
- Location
- The Netherlands
I made a translation so you can read along
https://corsius.wordpress.com/2017/08/03/incovenient-untruth/
He is positive toward the criticism. In his tweet he called the PACE-trial (in)famous.
Jonathan Edwards
"Gibberish"
- Messages
- 5,256
That seems helpful.
Jonathan Edwards
"Gibberish"
- Messages
- 5,256
Translation: So, dispend judgment and advice untill the scientists reach consensus
How long may that take? And for that time CFS/ME'ers should be a burden on employers and society?
That can't be done. I'm off opinion a corporate or insurance doctor should pass (strict?) judgement.
Just like a judge. A judge commits a felon if he doesn't pass (strict?) judgement on a case presented to him.
And a judge is someone selected on the basis of having absolutely no vested interest in the judgment to be made.
Come off it Melchers, if you are going to be a bully boy you might do better to do it in private.
How long may that take? And for that time CFS/ME'ers should be a burden on employers and society?
That can't be done. I'm off opinion a corporate or insurance doctor should pass (strict?) judgement.
Just like a judge. A judge commits a felon if he doesn't pass (strict?) judgement on a case presented to him.
And a judge is someone selected on the basis of having absolutely no vested interest in the judgment to be made.
Come off it Melchers, if you are going to be a bully boy you might do better to do it in private.
I have been ill now for forty nine years and watched this debacle unfold. At first I believed that all we needed was evidence of what was wrong with us but I was mistaken and naive. In 1959 they knew that exercise made us worse. Doctors have known for years that diabetes is a disease that unfolds when the sugar in the blood is too high and it was accepted even though no one had actually pinpointed exactly what was going wrong in the body. With ME more and more proof was demanded yet all proof was either dismissed as the result of too small studies while research funds were denied or simply ignored.
I could not understand why they did not leave us ME people alone and concentrate on chronic fatigue which is ubiquitous and distressing enough. As the years have passed the plan has become revealed and it is all about MONEY. We were the canaries for a system that is now being rolled out throughout the medical world.
The deconditioning hypothesis is simply the justification for medical treatment which consists of giving people the "tools and skills" to cure themselves. That is why it can be done in group therapy; there is no talking over individual worries as there would be if they really believed we were ill because it helped us cope with problems in our lives. No, they give people a talk tell them what to do - and here is they clever bit - now it is up to each person to apply it to their own life.
And if they don't it is THEIR OWN CHOICE. They choose to be ill, so they do not deserve, or need, any benefits, any insurance payouts, any more treatments and definitely no sympathy from society. Problem solved and this is being rolled out across the entire spectrum of illness because of its "success" with ME.
That is why they are fighting back so hard. We are actually bringing down a whole system of society.
After all these years I have become ANGRY. It was when I realised that the BBC did a programme about parent's of ME children being accused of Munchausen's by Proxy 19 YEARS AGO. And then did another one about the same subject a few weeks ago.
It is a war and we are fighting for our lives and those of our children.
Unfortunately I have little hope for my time but it must come.
Mithriel
I could not understand why they did not leave us ME people alone and concentrate on chronic fatigue which is ubiquitous and distressing enough. As the years have passed the plan has become revealed and it is all about MONEY. We were the canaries for a system that is now being rolled out throughout the medical world.
The deconditioning hypothesis is simply the justification for medical treatment which consists of giving people the "tools and skills" to cure themselves. That is why it can be done in group therapy; there is no talking over individual worries as there would be if they really believed we were ill because it helped us cope with problems in our lives. No, they give people a talk tell them what to do - and here is they clever bit - now it is up to each person to apply it to their own life.
And if they don't it is THEIR OWN CHOICE. They choose to be ill, so they do not deserve, or need, any benefits, any insurance payouts, any more treatments and definitely no sympathy from society. Problem solved and this is being rolled out across the entire spectrum of illness because of its "success" with ME.
That is why they are fighting back so hard. We are actually bringing down a whole system of society.
After all these years I have become ANGRY. It was when I realised that the BBC did a programme about parent's of ME children being accused of Munchausen's by Proxy 19 YEARS AGO. And then did another one about the same subject a few weeks ago.
It is a war and we are fighting for our lives and those of our children.
Unfortunately I have little hope for my time but it must come.
Mithriel
This.
That's a really interesting skills mix, especially in the context of PACE.
boombachi
Senior Member
- Messages
- 392
- Location
- Hampshire, UK
@Lou Corsius, thank you for the translation.
- Messages
- 724
- Location
- Yorkshire, England
Thanks for trying.
I find it interesting that a couple of years before I was diagnosed with ME, I was hospitalized (and mostly bed bound) for about 6 weeks and lost a lot of weight and muscle mass.
Colleagues who visited from work were shocked by how much I had changed.
I went from a healthy person commuting by bicycle for between 1 hour 15 mins - 1 hour 30 mins, 5 days a week to walking with a borrowed walking stick and struggling to breathe after about 5 mins of walking.
Getting back to normal functioning was relatively painless, mostly muscle soreness/stiffness and tiredness, but also a upturn in mood and confidence at the same time, as i slowly improved.
When I was diagnosed with ME, the experience of trying the same practices that had worked a couple of years before had the opposite effect in mood and confidence, and completely different physical symptoms, and much more of them.
So, if 'ME/CFS' is a 'condition' problem,
- Where are the studies made up of people like me with experience of both?
- Why not an exploration of the similarities and differences for people who have experienced both?
I'm not a research scientist, but if I was developing a de-conditioning hypothesis to explain 'ME/CFS' shouldn't this area be the place where where I began research?
Jonathan Edwards
"Gibberish"
- Messages
- 5,256
From the point of view of a rheumatologist the idea that ME/CFS is a problem of reconditioning seems completely ridiculous.
Deconditioning (sufficient to prevent the normal daily activities of an average rather sedentary lifestyle) on its own will respond to just getting back into a normal pattern of activity, not even bothering to do any 'exercise', within a month. Astronauts get back to normal function pretty quickly. I became deconditioned as a junior houseman with late nights and spending all day taking down medical notes and nothing else. I went from having swum a mile wide Finnish fjord and back without a qualm to having to give up on a second length of breaststroke. But after a two week holiday I was back to swimming as far as I liked. Patients who are immobilised as part of treatment mobilise rapidly once there is no obstruction to doing so. On its own, deconditioning is simply not an issue.
Most reversible cases of deconditioning in a medical context go together with catabolic states where there is an active consumption of muscle tissue as part of a stress response to surgery or trauma or sepsis. In this situation things take longer. Reversing catabolism after surgery can be prolonged. After an attack of multiple sclerosis rehabilitation involves nerve recovery as well as muscle use. Graded exercise therapy dates back to the rehabilitation centres set up during the Second World War. Wounded soldiers might take months to gain strength because of all sorts of complicating factors and the limitations of scarred limbs. Getting back to work may have meant being able to do a physical job. The rehab centres went on doling out graded exercise for rheumatology patients until about 1985, when it became clear to rheumatologists that they were mostly a waste of time, partly because we had other means of getting rid of the reason for the deconditioning, like replacing worn joints.
Children are different in the way they return to activity when ill but largely in that they do not push on with exercise if they have pain. They do not seem to be 'vigilant' about their own ability to manage, so they need encouragement. But a child with no pain will get mobile as quick as an adult.
I do not know that much about the symptoms of ME/CFS in the sense that I have not very often actually listened to someone talking to me as a patient, answering my detailed questions - most of my patients had RA. But from what I hear on PR I cannot work out why anyone should think deconditioning would explain sensitivity to noise, pain, PEM, etc. etc. And it cannot possibly explain 'crashes' - that would be a physiological impossibility.
As far as I can see the only thought in some people's minds is 'better send them to a therapist, doesn't matter which really as long as I don't need to do any more'. Physios are always available so they will do.
Deconditioning (sufficient to prevent the normal daily activities of an average rather sedentary lifestyle) on its own will respond to just getting back into a normal pattern of activity, not even bothering to do any 'exercise', within a month. Astronauts get back to normal function pretty quickly. I became deconditioned as a junior houseman with late nights and spending all day taking down medical notes and nothing else. I went from having swum a mile wide Finnish fjord and back without a qualm to having to give up on a second length of breaststroke. But after a two week holiday I was back to swimming as far as I liked. Patients who are immobilised as part of treatment mobilise rapidly once there is no obstruction to doing so. On its own, deconditioning is simply not an issue.
Most reversible cases of deconditioning in a medical context go together with catabolic states where there is an active consumption of muscle tissue as part of a stress response to surgery or trauma or sepsis. In this situation things take longer. Reversing catabolism after surgery can be prolonged. After an attack of multiple sclerosis rehabilitation involves nerve recovery as well as muscle use. Graded exercise therapy dates back to the rehabilitation centres set up during the Second World War. Wounded soldiers might take months to gain strength because of all sorts of complicating factors and the limitations of scarred limbs. Getting back to work may have meant being able to do a physical job. The rehab centres went on doling out graded exercise for rheumatology patients until about 1985, when it became clear to rheumatologists that they were mostly a waste of time, partly because we had other means of getting rid of the reason for the deconditioning, like replacing worn joints.
Children are different in the way they return to activity when ill but largely in that they do not push on with exercise if they have pain. They do not seem to be 'vigilant' about their own ability to manage, so they need encouragement. But a child with no pain will get mobile as quick as an adult.
I do not know that much about the symptoms of ME/CFS in the sense that I have not very often actually listened to someone talking to me as a patient, answering my detailed questions - most of my patients had RA. But from what I hear on PR I cannot work out why anyone should think deconditioning would explain sensitivity to noise, pain, PEM, etc. etc. And it cannot possibly explain 'crashes' - that would be a physiological impossibility.
As far as I can see the only thought in some people's minds is 'better send them to a therapist, doesn't matter which really as long as I don't need to do any more'. Physios are always available so they will do.
Jonathan Edwards
"Gibberish"
- Messages
- 5,256
Here's a thought. I actually included it in a recent critique of a Cochrane review but I have not aired it here.
The patients who were treated with GET in PACE were presumably treated by physios working on the basis that the patients were mistakenly thinking that they could not do more exercise and just needed encouraging into thinking that with more activity they would feel better. And then with some exercise they would find they were indeed better. So the GET would have been associated with telling the patient that they should think they could be better and that nothing was really stopping them and that with a more proactive approach they would find they would improve as the treatment progressed.
Sound familiar? Isn't this what they call CBT? Or at least that sort of CBT that ME/CFS patients get. So the arms in PACE are really Standard care; pacing ; CBT; CBT plus GET. The last two showed no real difference in outcome so there is no reason to attribute any improvement to exercise therapy.
OK, it cannot be that easy. Someone is going to point out I have missed something. But what?
(And remember, in the UK physios nearly always wear blue cardigans as well.)
The patients who were treated with GET in PACE were presumably treated by physios working on the basis that the patients were mistakenly thinking that they could not do more exercise and just needed encouraging into thinking that with more activity they would feel better. And then with some exercise they would find they were indeed better. So the GET would have been associated with telling the patient that they should think they could be better and that nothing was really stopping them and that with a more proactive approach they would find they would improve as the treatment progressed.
Sound familiar? Isn't this what they call CBT? Or at least that sort of CBT that ME/CFS patients get. So the arms in PACE are really Standard care; pacing ; CBT; CBT plus GET. The last two showed no real difference in outcome so there is no reason to attribute any improvement to exercise therapy.
OK, it cannot be that easy. Someone is going to point out I have missed something. But what?
(And remember, in the UK physios nearly always wear blue cardigans as well.)