No Reduction of Severe Fatigue in Patients With Postpolio Syndrome by Exercise Therapy or CBT

[alex3619]

I'm surprised there isn't something called 'post-cancer fatigue syndrome'.

If you read widely its a mishmash of post cancer fatigue, post cancer fatigue syndrome, and cancer related fatigue. Its not formally called PCFS but its inferred that is what it is.

 

[halcyon]

No surprise someone would want to try this, PPS is similar to ME in some ways. What's surprising is that this passed ethics review. Exercise is one of the worst things you could do for someone with polio, why would it magically be good for someone with post-polio? Nobody knows what causes PPS, but one theory is that virus is still present and another is that the remaining motor neurons are overworked from picking up the slack from the neurons that polio killed. If either or both of these were true exercise would only make things worse and indeed PPS sufferers seem to have something similar to PEM from even slight exertion.

 

[SOC]

article said:
Further research should investigate explanations for the lack of efficacy of these 2 currently advised approaches in clinical practice, which may provide clues to improving treatment aimed at reducing fatigue in PPS.

Erm... why should there be further research to explain this? The explanation is clear -- the therapy isn't appropriate. It doesn't work. Do we need further research to explain why standing out in the rain singing Reggae songs doesn't work to reduce fatigue in postpolio syndrome? Or why eating clams on Thursdays doesn't reduce fatigue in postpolio syndrome?

I find it incredibly irritating that the assumption is that this therapy should work and it is therefore necessary to do more research to explain why it doesn't. No, the freaking therapy doesn't work. You just proved it. Move on. Find a new field of research. Retire. Whatever. Let it go already.

This essentially reads: at the end of CBT, people were more emotionally damaged by the therapy than were controls.

They need further research to explain why therapists continue to push a therapy shown to harm patients.

Time for us to be the researchers and the psychoquacks to be the subjects. I'm sure there's plenty of good potential topics:
Ambiguity Catastrophizing in Psychotherapists Treating Unexplained Illness
Persistence of False Treatment Efficacy Beliefs in Psychotherapists Treating Unexplained Illness
Treatment Obsessions in Psychotherapists Treating Unexplained Illness

Any other ideas?

 

[Grigor]

It's in Dutch: https://www.radboudumc.nl/Zorg/Afdelingen/nkcv/Pages/Vermoeidheidnakanker.aspx

I google translated the most important part (with a few touch ups by moi):


It's pretty much the same story that they tell about cfs - there could be a biomedical stressor, but the persistance of the fatigue is pretty much caused by our own little selves.

I'm shocked. This is really a scandal. I'm ashamed to be dutch after reading this . I remember my GP offering me to do CBT cause cancer patients also do it . This CBT for everything really got out of hand .Just a big excuse not to do any proper research on why things are happening . A nice cheap way. After having dealt with all the horror of cancer you get this on top of it .Blegh.

 

[out2lunch]

Nobody knows what causes PPS, but one theory is that virus is still present and another is that the remaining motor neurons are overworked from picking up the slack from the neurons that polio killed. If either or both of these were true exercise would only make things worse and indeed PPS sufferers seem to have something similar to PEM from even slight exertion.

Whatever happened to the "polio vaccine causes a PPS variant that is ME/CFS" theory that was modestly popular in the nineties? Was it disproven? Or simply dropped off the radar?

Those of us in the old fart category remember the live virus vaccine via sugar cube delivery which was eventually replaced with the killed virus injectable vaccine because some individuals contracted polio from the live variety.

Has anyone ever done the math regarding how many of us received the live vaccine, and how well our disease matches up with PPS?

 

[CFS_for_19_years]

Erm... why should there be further research to explain this? The explanation is clear -- the therapy isn't appropriate. It doesn't work. Do we need further research to explain why standing out in the rain singing Reggae songs doesn't work to reduce fatigue in postpolio syndrome? Or why eating clams on Thursdays doesn't reduce fatigue in postpolio syndrome?

I find it incredibly irritating that the assumption is that this therapy should work and it is therefore necessary to do more research to explain why it doesn't. No, the freaking therapy doesn't work. You just proved it. Move on. Find a new field of research. Retire. Whatever. Let it go already.



They need further research to explain why therapists continue to push a therapy shown to harm patients.

Time for us to be the researchers and the psychoquacks to be the subjects. I'm sure there's plenty of good potential topics:
Ambiguity Catastrophizing in Psychotherapists Treating Unexplained Illness
Persistence of False Treatment Efficacy Beliefs in Psychotherapists Treating Unexplained Illness
Treatment Obsessions in Psychotherapists Treating Unexplained Illness

Any other ideas?

I think this falls into the category of "Psychotherapists gotta eat."

 

[halcyon]

Whatever happened to the "polio vaccine causes a PPS variant that is ME/CFS" theory that was modestly popular in the nineties? Was it disproven? Or simply dropped off the radar?

I have come across this but I don't think this theory ever achieved any credibility.

One of the prominent UK ME researchers Peter Behan stated that "PPS is identical in every way to chronic fatigue syndrome".

 

[JaimeS]

Exercise is one of the worst things you could do for someone with polio

Gentle stretching and PT is good. (Sorry, just wrote a mini-paper on Sister Elizabeth Kenny!)

Do we need further research to explain why standing out in the rain singing Reggae songs doesn't work to reduce fatigue in postpolio syndrome? Or why eating clams on Thursdays doesn't reduce fatigue in postpolio syndrome?

The world wants to know.

Persistence of False Treatment Efficacy Beliefs in Psychotherapists Treating Unexplained Illness

My favorite.

I don't mean this to be a 'so there!', I'm being 100% literal - I think it is a sickness on their part. The financial and emotional consequences for admitting they have been wrong this whole time are too high, and I just can't think that they're defrauding the public because they were born in hellfire. No matter how implausible it may seem to us, these people seriously think they're helping others. They are sure we're wrong. Despite

[Edit: the only problem with this picture is that it's implied that the good scientists are always plentiful and the people with fingers stuck in their ears are in the minority. Majority vote counts for zip.]

-J

 

[Seven7]

Let it go already.

I am sorry I couldn't resist !!!!

 

[JaimeS]

OMG, @lnester7 !

 

[SOC]

I don't mean this to be a 'so there!', I'm being 100% literal - I think it is a sickness on their part. The financial and emotional consequences for admitting they have been wrong this whole time are too high, and I just can't think that they're defrauding the public because they were born in hellfire.

I agree completely. I think there is a form of mental illness going on with these people. In some cases it may be as serious as an in-born lack of empathy associated with narcissism. In most I suspect it to be something milder -- forms of denial, or inability to cope with the reality of the ambiguity and unfairness of the world, or an unwillingness to accept that what they were told by their chosen authority figures is wrong and harmful.

No matter how implausible it may seem to us, these people seriously think they're helping others.

I'm not willing to go that far. I'm willing to believe that they don't think they are doing any harm and that they are following established precepts for what is the "right" way to treat us. I can't believe that people who truly, deep down in their hearts, want to help people could be so oblivious to the obvious cruelty of blaming the sick for being sick. Any decent person looking beyond the superficial (as any clinician or researcher should be expected to be doing) can see the lack of sense and substance. A more normal reaction for people looking at the current state of ME and who truly want to help is closer to "I Thought it was a Typo".

...these people seriously think they're helping others

Oh wait, silly me making assumptions. I assumed those others they're supposedly helping are meant to be ME patients. These psychoquacks could seriously think they're helping others -- insurance companies, government health agencies, fellow BPS researchers...

 

[SOC]

I think this falls into the category of "Psychotherapists gotta eat."

"I was just doing my job."
"I was just following orders."

 

[JaimeS]

I'm not willing to go that far. I'm willing to believe that they don't think they are doing any harm and that they are following established precepts for what is the "right" way to treat us. I can't believe that people who truly, deep down in their hearts, want to help people could be so oblivious to the obvious cruelty of blaming the sick for being sick.

But, dontcha know, "you've got to be cruel to be kind".

In their minds, they Walk the Path of the Righteous. Their goal is to smash their patients' silly "illness beliefs" so they can get better. In order to do that, they have to make it super-clear that we are out of our minds, first, so that we can... climb back into them?

Look, I'm not saying it's sensible. In fact, as I stated, it's its own flavour of crazycakes. There's a definite narcissism there, the heroic savior-complex that is required to actually say to someone, "I know you think you're sick - but guess what? I know better."

I'm not saying their actions are good. I'm not even saying they think their actions are good. I believe that some think their actions are necessary; some think there is nothing else to do; and even if they believe it isn't quite 'right', they are willfully unaware of the damage caused by their recommendations or attitude. Then in an outermost circle of hell you've got the guys like the physiotherapist I met at Mayo, who told me to exercise more and gave me a pamphlet to that effect. When I looked him in the eye and said, "you know that this won't help me at all, right?" he sighed and said, "yeah. Yeah, I know that. Feel free to ignore what's in there, but... but I'm required to give it to you."

And apparently required to behave as though it's good advice, too. He is the guy who's just 'following orders' even though he knows there isn't something quite right. If I had been less informed, I would have done as he suggested.

-J

 

[SOC]

In their minds, they Walk the Path of the Righteous.

My kind, wonderful, wise grandmother used to say something to the effect that self-righteousness is the biggest sin of the average person and that it is so pervasive and cruel that it causes more hurt in the world than the the relatively few murders. Only she said it better.

 

[CFS_for_19_years]

"I was just doing my job."
"I was just following orders."

"I was just collecting my paycheck like clockwork."

 

[CFS_for_19_years]

They need further research to explain why therapists continue to push a therapy shown to harm patients.

Time for us to be the researchers and the psychoquacks to be the subjects. I'm sure there's plenty of good potential topics:
Ambiguity Catastrophizing in Psychotherapists Treating Unexplained Illness
Persistence of False Treatment Efficacy Beliefs in Psychotherapists Treating Unexplained Illness
Treatment Obsessions in Psychotherapists Treating Unexplained Illness

Both my PCP and psychiatrist have tried to have serious conversations with me about the benefits of exercise and I've ended up muttering and shaking my head without making much of a dent in the conversation - they try to tell me there are papers and articles to support their theory (nonsense). I've sent links to articles about the harm of exercise to my PCP and I have no clue if he looks at them.

I think I will have to remember to come back with "Have you heard about the paper that's getting ready for print - Persistence of False Treatment Efficacy Beliefs in Clinicians Treating Unexplained Illness?" I wonder if they would even catch the sarcasm or just shake their heads "No" and continue on? They probably wouldn't miss a beat since they're on autopilot.

 

[Kyla]

↑
No matter how implausible it may seem to us, these people seriously think they're helping others.

I'm not willing to go that far. I'm willing to believe that they don't think they are doing any harm and that they are following established precepts for what is the "right" way to treat us. I can't believe that people who truly, deep down in their hearts, want to help people could be so oblivious to the obvious cruelty of blaming the sick for being sick. Any decent person looking beyond the superficial (as any clinician or researcher should be expected to be doing) can see the lack of sense and substance.

I really feel like at this point it is just such an entrenched cognitive bias that there is no amount or type of evidence that would convince this group.
I'm sure I have posted this before, but it is just so relevant:

http://www.newyorker.com/science/maria-konnikova/i-dont-want-to-be-right

The summary is basically that the more important the viewpoint is to a person, the more they will manipulate, ignore or "forget" anything that contradicts it. Not super comforting in terms of getting this psych-monkey off our backs anytime soon, but they will fade in to the background as the evidence continues to mount.

 

[Woolie]

The article is behind a pay wall.

Full article available here:
https://www.dropbox.com/s/vl8x6wn8p...Repair-2015-Koopman-1545968315600271.pdf?dl=0

 

[Woolie]

This is what the "single blinded" thing seems to refer to (from the paper):

The randomization scheme was computer generated, and random blocks of sequences were created with variable block sizes of 3 and 6. An independent investigator performed the randomization. The investigator responsible for the inclusion and the 2 experimenters who performed the outcome assessments were blinded to the group allocation.

 

[SOC]

This is what the "single blinded" thing seems to refer to (from the paper):

So as soon as those assessing the outcome of these psychotherapeutic treatments for physiological conditions are blinded, suddenly the amazing effectiveness of these therapies disappear. What a surprise.

This is a kind of minimal blinding. Those giving the treatment and those receiving the treatment are not blinded (How could they be with psychotherapy?), so only those assessing the outcome can be blinded. Even so, the therapy is proved worthless, and even emotionally harmful. So even the most basic of efforts to eliminate researcher bias completely destroy their claims of efficacy. Imagine if they could manage to use real scientific methods to control for bias, confounding factors, and random effects. The truth might actually come out.