Psychological Medicine paper: behaviours that perpetuate ME: Chalder and Ross-Morris

[worldbackwards]

I guess we'll soon find out.

https://www.researchgate.net/public...or_people_with_progressive_multiple_sclerosis

It's a wonder they bother doing the trials really. I could write that abstract up now.

 

[nasim marie jafry]

I don't comment on PR often, am just an occasional visitor (& constantly forget/reset my PW!), but a Twitter link brought this paper to my attention and I have to speak up. These 'researchers' need to stop taking the piss, it is abominable what they are doing. Have they no shame? Post-PACE, they seem more reckless and stupid than ever. I also just saw the post from 2014 (?) from the researcher who came on here looking for recruits, what disingenuous BS.

 

[nasim marie jafry]

My own contribution:

Gosh, I sounded cranky!

'Please do something relevant in the field for a change, or go get a real job. Either way, stop lying to and about ME/CFS patients - enough is enough.'

I wish I could LIKE your comment a thousand times, Valentijn - Exactly, they need to start contributing to the field in a meaningful, respectful manner or leave us the hell alone. My preference is they they leave us the hell alone. Let's leave solving of ME to actual scientists - the immunologists, virologists, neurologists etc... (Sorry, am rubbish at replying to quotes properly, my poor head is not up to at moment, am trying to cook, but so angry!)

 

[RogerBlack]

Let's leave solving of ME to actual scientists - the immunologists, virologists, neurologists etc... (Sorry, am rubbish at replying to quotes properly, my poor head is not up to at moment, am trying to cook, but so angry!)

I disagree.
Unfortunately, the well has been poisoned.
I know without doubt that cognitive effort can cause PEM, and symptom worsening over the long term.
Lack of sleep worsens this.
At least part of my lack of sleep, and cognitive effort leading to later symptoms have been due to recurring useless thoughts about my CFS.

Poor activity management of things I am in control of has also played a part.

None of this is directly related to the cause of the disease, and help researching better therapies and self-managment strategies would be solidly in the psych arena.

If I had been better at self management and managing my disease - rather than denying it at times, I would at the moment be able to consider continuing to learn to drive, and perhaps take some part-time work, rather than being mostly bedbound.

Psych research has a vital role in this.
It is unlikely a cure will come in the next 5 years.
We need better disease management too.

The notion that everyone knows their limits and can properly self-manage is as wrong as forcing people to do gradually more ignoring symptoms.

But, as I say, the well has been poisoned, and such a trial is made hard not just by overcoming the 'illness perpetuating belief' crowd and getting your trial funded, but patient scepticism in that you are going to have to do research which may worsen peoples condition in order to find the best coping strategies.

Not doing stuff that would not worsen your condition because you think it would is as disabling as a real worsening limit being at that level.

 

[Cheshire]

If I had been better at self management and managing my disease - rather than denying it at times, I would at the moment be able to consider continuing to learn to drive, and perhaps take some part-time work, rather than being mostly bedbound.

Psych research has a vital role in this.
It is unlikely a cure will come in the next 5 years.
We need better disease management too.

It's called patients education, and you don't need psychiatry to teach patients how to manage activity when you have ME, certainly not the kind that are "taking care" of us right now.

If you have difficulty to accept that you are ill, then you may need psychological support but that's another thing.

 

[nasim marie jafry]

Sorry, Roger, I don't really understand your point.... Of course, illness management is important, I think you have misconstrued my last sentence... I have been ill for 33 years, I know intuitively what I can and can't do at this point, better than anyone. I too overdid it at beginning when I should not have, leading to severe, hellish relapse...Still, even with optimum management, no one can predict the course their illness will take, it is not measurable or certain. One can 'minimise' PEM as much as poss, but while the disease process is there, it can never truly be 'managed' (in my experience at least). I just don't want these researchers near the illness, yes, they have the poisoned the well (if that is what you mean).

 

[Molly98]

I disagree.

Poor activity management of things I am in control of has also played a part.

None of this is directly related to the cause of the disease, and help researching better therapies and self-managment strategies would be solidly in the psych arena.

If I had been better at self management and managing my disease - rather than denying it at times, I would at the moment be able to consider continuing to learn to drive, and perhaps take some part-time work, rather than being mostly bedbound.

Psych research has a vital role in this.
It is unlikely a cure will come in the next 5 years.
We need better disease management too.

I also disagree with this.

I don't see what activity management or recognising the limitations of a serious organic disease is anything to do with the psych arena. It requires information and education which should be able to be done by any number of health professionals. Activity management, what is this to do with Psychological therapies?

If people with ME were educated and informed properly when diagnosed and not sent to the psych lot to have their cognitions meddled with, then there would be much less chance of them pushing themselves beyond their limitations as they would have been educated properly as to the potential harms of doing so and would have the validation of medical professionals telling them they really do have a disease that makes them unwell when they exert themselves and so will be less likely to be in denial or be trying to please others by pushing themselves.

CBT is not the only psychological therapy out there and as I have said before it is not often held with much regard within the psych world, seen as a sticky plaster approach. CBT is not the cure for everything ( doubt it "cures" anything much) and goes way-way beyond its remit in so many arenas because it is the latest buzz word and cheap.

To become a psychotherapist you generally have to spend 5 years in training, where as you can do a short CBT course in a matter of weeks so you can see why the psych community actually also get pissed off with the CBT cure all narrative, it is not that simple and you would actually find many very respectable psychotherapists agreeing with many of the things we say on here regarding CBT.

If any therapy was to be useful to pwME I would suggest that straightforward counselling would be the most useful approach. As I see it ,grief and loss have the biggest emotional/ psychological impact - loss of career, loss of friendships, relationships, social life, loss of mobility,loss of identity, loss of infinite things as we all are only too aware, CBT is useless at addressing loss, yet this in my mind would be far more helpful than a CBT therapist trying to change my cognitions.

 

[RogerBlack]

It's called patients education, and you don't need psychiatry to teach patients how to manage activity when you have ME, certainly not the kind that are "taking care" of us right now.

If you have difficulty to accept that you are ill, then you may need psychological support but that's another thing.

And what research is that patient education to be based off?

'Knowing what you can do' - great.
Should every single person have to explore the limits of this, and risk crashes - is there a coherent activity pattern that leads to long-term issues, ...
It is very clear that symptoms differ significantly between people, and signs of 'doing too much' do as well.

This is precisely not the sort of research that should be done a person at a time, or with self-selected reporting.
I am not arguing that CBT or any particular sort of therapy is going to help particularly with the physical manifestation of the illness - the 'outputs'.

But trying to learn what causes long-term crashes (activity patterns) and how to modify them to maximise long-term performance is vital, and nobodies doing any research into this.

Some fraction of patients will have 'nice' well managed ME/CFS, which they have good warning signs that they picked up on early. Others - not so much.
I note the above 'crash' in my case came after I thought I knew my disease, and had it for 20 years.

 

[BurnA]

And what research is that patient education to be based off?

'Knowing what you can do' - great.
Should every single person have to explore the limits of this, and risk crashes - is there a coherent activity pattern that leads to long-term issues, ...
It is very clear that symptoms differ significantly between people, and signs of 'doing too much' do as well.

This is precisely not the sort of research that should be done a person at a time, or with self-selected reporting.

Everybody is different and everybody has different limits. The person who knows those limits best is each individual.

It's not research, it's learning.
Learning to survive, humans have a talent for it.

 

[Barry53]

These people just don't know when they are beaten. There must be a psychiatric label for that....just can't think of it right now.

Pervasive Self-Denial Syndrome?

 

[Barry53]

And if your theory is about damaging false beliefs it might be a good idea to remove the beam from your own eye....

Absolutely. Feels more akin to middle ages sorcery than modern medicine.

 

[Mary]

The same. Cancer fatigue as well. "Common sense" apparently

https://twitter.com/i/web/status/802806296713932800

This is beyond horrible:

Conclusion
This study explored the subjective experience of fatigue after cancer using the SRM. CrF (cancer-related fatigue) should be approached as a complex psychosocial issue and considered from the patient perspective to facilitate better understanding and management of symptoms. The SRM is an applicable framework for identifying modifiable factors that could lead to improved coping with CrF in post-treatment cancer survivors.

The amount of damage people like this can inflict is boundless. I try very hard not to hate people or wish them ill, but I can't help but wishing one of these "researchers" would experience firsthand the "psychosocial" effects of cancer-related fatigue.

 

[daisybell]

It really is extraordinary to read articles on post-cancer fatigue, which assume blithely that once treatment has stopped, any ongoing fatigue must have psychosocial roots.... it seems to me that fatigue is derided as 'weakness' no matter what field of medicine. The arrogance and disdain is truly horrible.

I wish a month of severe fatigue on all those researchers.... that would change their minds pretty bloody quickly. And if it didn't, I'd give them another month and another in which they could keep trying gradually exercising, not taking naps because this is associated with feeling more tired, and wasting huge amounts of money on CBT.

In fact they're bloody lucky I'm not giving them life-long fatigue. I'm sure though that I wouldn't be able to stand their whining.....

 

[Valentijn]

Should every single person have to explore the limits of this, and risk crashes - is there a coherent activity pattern that leads to long-term issues, ...
It is very clear that symptoms differ significantly between people, and signs of 'doing too much' do as well.

Except you're describing biomedical issues and research. For example, many find it helpful to watch their heart rate and pay close attention to physical symptoms such as pain, getting short of breath, etc. Crashing is a physiological phenomenon, not a cognitive or behavioral one.

I've never felt it to be of any practical use to explore how I'm feeling or thinking about my disease. Maybe some people would, but that would be an issue of adapting to a chronic disease, and nothing specifically to do with ME or even a majority of ME patients.

 

[Jonathan Edwards]

None of this is directly related to the cause of the disease, and help researching better therapies and self-managment strategies would be solidly in the psych arena.

I thin you have reasonable point @RogerBlack but I am not sure why this would be in the psych area. In the 1980s treatment and research for rheumatoid arthritis were very similar to those for ME now. We had some drugs that helped symptoms a bit but apart from that it was mostly a matter of activity management and moral support. The only treatment for many cases was short respite care sessions in hospital where patients were rested and given swimming pool sessions and wax baths.

The therapists who provided the self management programme were occupational therapists, not psychologists. It never entered anybody head to use a psychologist.

I was personally interested in the effects of activity on joint damage. There turns out to be a specific link between physical forces and immune processes. By 1998 we had pretty much worked out the mechanisms for the major rheumatic diseases. I was interested in the 1980s in setting up research into which activity management programmes. I actually did a studying mice and wrote a paper on pressure and vasculitis in patients. But I never set up any systematic studies because they would have involved occupational therapists and I knew that there was never any hope of them being objective about their findings.

Although the principles of good scientific methodology are common sense in practice very few people can among the critical reasoning needed to stop themselves from trying to prove what they want to prove. All Freudian psychology is based on proving what you want to prove, as Popper pointed out. Even highly intelligent people cannot stop themselves ruining their science. Within the therapy professions - physiotherapy, occupational therapy, psychotherapy - there is a culture that considers it legitimate to believe you must be doing the right thing because your theory says it is right.

So for rheumatoid arthritis we had something fairly similar to CBT, called joint management training. This was a programme of activity self-management that the occupational therapists thought must be good for patients because their theory said it would, but in practice was based on no evidence. By 1995 the occupational therapy service collapsed, partly because there was no funding but partly because rheumatologists had some drug treatments that worked. By 2000, once we had drugs that kept most people well we simply forgot about occupational therapy because it was irrelevant. Occupational therapists still assessed people for wheelchairs and stair lifts if they were disabled but activity management was seen as an irrelevance.

I think I agree that since curative treatment may be a while coming for many ME sufferers there is a good argument for still trying to find a scientific evidence base for activity management. And patients working it out for themselves is not a valid option because what seems to help short term may not be the best long term. I just do not think there is any possibility of doing this research using practicing therapists who have been 'trained' to treat people according to some unproven theory. Such people cannot distance themselves enough from their parental instincts to be objective. The only way to do research is to use untrained researchers who have been told to apply principles based a various theories without having any idea which theory is supposed to be best. But therapists will never allow this because it threatens their beliefs in their own expertise.

The elite sports people have actually cracked this. Nobody used to think that in breast stroke you should do a very short arm stroke and then glide for most of the stroke cycle. But the training teams who were prepared to put objective measurement before theory won out by getting their athletes to win gold. Something similar is needed for ME research. It would have nothing to dow with psychologists because all they do peddle theories. The practical side of self-management should be completely theory neutral. The problem is in systematic monitoring of outcome. But a step in the right direction would be to completely dissociate protocols and monitoring from any theory - laden 'therapy'. If Michael Phelps has asked 'but why should I swim that way' and had needed convincing about the theory of it (as far as I know there is no thereat just works) he would never have got to Rio.

 

[Solstice]

Except you're describing biomedical issues and research. For example, many find it helpful to watch their heart rate and pay close attention to physical symptoms such as pain, getting short of breath, etc. Crashing is a physiological phenomenon, not a cognitive or behavioral one.

I've never felt it to be of any practical use to explore how I'm feeling or thinking about my disease. Maybe some people would, but that would be an issue of adapting to a chronic disease, and nothing specifically to do with ME or even a majority of ME patients.

I'll go one further. I've followed a course in CBT and GET at Roessingh in the Netherlands. They've been trying to change my convictions about my disease(i really didn't have much of an idea about it to begin with). They've pushed me to work out. This all ended in selfblame and overexertion. Only to stop when I read Michael Maes' book, subsequently went to find out more about my disease and finally submitted myself to tests at KDM. It was like a huge burden was lifted from my shoulders. KDM in turn told me to stop sports(football/fitness) and the dutch M.E. community on me-gids.net helped me to stop overexerting alltogether.

Gone was the selfblame, most of the malaise that comes with overexerting and I actually became a pretty happy camper after that, eventhough I still had severe limitations which had been made worse over time by said CBT and GET.

My mother actually pushed me to read Maes' book and find out more about my disease because it was clear to her that what I did at Roessingh wasn't working at a time where my response was to try harder and blame myself some more.

What we need is GP's, physicians etc. who are atleast well versed enough in the disease to know that it isn't the patients fault(who the fuck comes up with stuff like that anyway) and that overexertion is baaaaaad.

 

[trishrhymes]

Three cheers @Jonathan Edwards and @Solstice.

We need evidence based science.

We do not need not 'therapy' inflicted on us by people with fixed unfounded theories and a psychological need to be right and who pile blame on the patient when their 'treatment' doesn't work.

 

[taniaaust1]

I find it difficult to believe they are acting in good faith. I think they despise patients and don't mind exploiting us to advance their careers by publishing this junk.

or what insurance company is secretly paying them to keep on doing as they do...

 

[taniaaust1]

It is and I wonder whether they ever went to a good med school.

they probably cheated their way through med school, they are so low I wouldnt put that past them.

 

[taniaaust1]

I'll go one further. I've followed a course in CBT and GET at Roessingh in the Netherlands. They've been trying to change my convictions about my disease(i really didn't have much of an idea about it to begin with). They've pushed me to work out. This all ended in selfblame and overexertion. Only to stop when I read Michael Maes' book, subsequently went to find out more about my disease and finally submitted myself to tests at KDM. It was like a huge burden was lifted from my shoulders. KDM in turn told me to stop sports(football/fitness) and the dutch M.E. community on me-gids.net helped me to stop overexerting alltogether.

Gone was the selfblame, most of the malaise that comes with overexerting and I actually became a pretty happy camper after that, eventhough I still had severe limitations which had been made worse over time by said CBT and GET.

My mother actually pushed me to read Maes' book and find out more about my disease because it was clear to her that what I did at Roessingh wasn't working at a time where my response was to try harder and blame myself some more..

no doubt this CBT/ GET group are causing depression and mental health issues in some of us when we "fail" to live up to the impossible expectations they are imposing on a sick group of patients. (I guess that then just plays into their hands as then they can say once we have got depression that we are thinking negatively about everything).

Just imagine if they sat down with a group of cancer patients and made them think they werent trying hard enough or needed to try harder when they found they couldnt do things due to their illness.

I want to see someone do a proper study on the harm this group is causing those who have ME and get it published.