Science Media Centre expert reaction to Journal of Health Psychology’s Special Issue on The PACE Tri

[MeSci]

Apart from any other reasons, like the increasing lab evidence for PEM, I know for a cold hard fact that deconditioning is not a primary factor for me, because I managed to keep up enough physical activity to avoid it for the first 2-3 years.

But it not only didn't help at the time, knowing what we now know it almost certainly contributed to a much poorer long term outcome.

And they wonder why we are skeptical of conventional medical advice about deconditioning and treating it with exercise.

Me too. I kept up a lot of activity for a long time - probably too much. It was just to keep the wolf from the door - work, plus a certain amount to stay sane (walks) and a little to keep the house and garden in order. I have a lot of difficulty doing that now that I am retired.

 

[user9876]

So even though there are other patients like me who have reported being made worse by these treatments in these clinics, the clinics will always claim there is no evidence that the treatments they provide make any patients worse.

I think those who talk about evidence based medicine often don't understand uncertainty and that an absence of evidence (due to things not being collected or tests not being done) is different from where there is evidence of no effect. These get lumped together.

 

[MeSci]

I don't know whether these have been posted elsewhere as I'm too foggy at present, but I will try to post them now - more to come, hopefully.

 

[Jan]

The whole deconditioning theory makes no sense to me. Most pwme I've known are highly motivated and tend to do too much (out of necessity and also wanting to keep up some degree of fitness) rather than too little. Most of us find out the hard way that too much activity makes us worse, the only time I've not tried to keep doing more is when I was bedbound and could barely make it to the bathroom.

The laughable thing is that I was diagnosed 27 years ago by a real ME specialist Dr William Weir. He advised rest, how I wished I'd listened. I had an exercise bike and had other ideas. So that makes me the exact opposite of the deconditioned, demotivated theory. I also kept trying to return to work over and over again until I reached the point of collapse.

I'd very much like the BPS brigade to answer some questions for me, maybe we should make a list and send it to our favourite BPS people?

Why does it hurt so much to hold my arms up eg, folding large items of washing or hanging them out, drying my hair?

Why does repetitive activity hurt so much eg brushing teeth, hair, cleaning etc?

Why does concentrating/ reading/ writing/ watching tv/ using computer and the most laughable, just talking and listening cause PEM? Surely deconditioned people can still manange to chat, socialize and watch tv ok?

Why can I no longer read books as I am unable to follow the plot, or remember the characters? The same for films and tv progs. I have to keep re-reading the paragraph, or rewinding programme over and over to take in any of it?

Why has my IQ dropped? Why do I forget the names of people I know well and every day objects? Why do I forget what was told to me 5 minutes ago? In fact, why is my memory so appalling that I feel like I have early dementia?

Why do flashing and rapidly moving images, shaky camera etc on tv make me feel so nauseous? I literally have to look away.

Why does PEM make me feel like I have serious head and spinal injuries? My aunt had very serious head injuries and nearly died. When she was feeling a little better she visited us, our symptoms were almost identical. So why do I have the symptoms of a patient with head injury?

Why the neurological conditions, trigemenal neuralgia, neuropathy, nerve pain across scalp, severe headaches even worse than migraines that can last for days?

Why do I now have allergies/food intolerance I didn't have before?

Why do I have severe reactions to many chemicals, choking, being unable to breathe, vomiting, headaches etc?

Why do I get dizzy/ orthostatic problems? Can deconditioning affect your ability to even stand? PEM can be brought on just by standing for too long ffs.

Why the noise and light sensitivity? Doorbell or phone can frighten me senseless.

Eta, I forgot the brain fog, lol. And why the pain, muscle pain, joint pain, nerve pain?

Second eta, where does the newly acquired dyslexia fit in to your theories? Why can't I read and write properly anymore, is it because I'm so unfit! It's so f'in ridiculous! Can someone please send a list like this to NICE and ask how GET and CBT will fix these symptoms?

 

[Barry53]

I think those who talk about evidence based medicine often don't understand uncertainty and that an absence of evidence (due to things not being collected or tests not being done) is different from where there is evidence of no effect. These get lumped together.

And that absence of evidence maybe because they made a point of not looking for it, or even worse, side-stepping it when they only had to reach out for it.

 

[Invisible Woman]

And that absence of evidence maybe because they made a point of not looking for it, or even worse, side-stepping it when they only had to reach out for it.

...and that, for me, is one of the things they should be damned for most.

 

[Barry53]

...and that, for me, is one of the things they should be damned for most.

... and I hope they are in due course. Honest mistakes are one thing; wanton incompetence and downright dishonesty is quite another, especially when people's lives are at stake.

 

[Cinders66]

Science media's singular dismissive expert reaction to the immune research seems to have one purpose, to quash interest in the Story. I'm not scientifically trained but to read comments by the state's journalists and Drs then Antony cleares it doesn't make sense that one man in psychiatry is put up as the definitive only opinion for uk media.

Why are the SMC being invited to observe and play a role in the. CMRC if their bias and fixed views seem clear. Are they there just in a CMRC PR capacity? & if they gladly attend and help run it etc what does it say about what they perceive the CMRC to be?

 

[MeSci]

Here is the version published in 2011. Note that it refers to 3158 being screened for eligibility, and the reasons for exclusion (page 4). (only 600-odd were accepted.)

I'm sure it's published elsewhere here but my location abilities are still impaired.

 

[MeSci]

Here is the version published in 2011. Note that it refers to 3158 being screened for eligibility, and the reasons for exclusion (page 4). (only 600-odd were accepted.)

I'm sure it's published elsewhere here but my location abilities are still impaired.

Just found a version posted by Snow Leopard which is 'Not open for further replies' (?):

http://forums.phoenixrising.me/inde...1-comparison-of-adaptive-pacing-therapy.8787/

 

[slysaint]

Weren't some of them stolen? They were kept in a desk behind an unlocked door and at least some of the recordings got lost in a robbery as far as I remember. So the PACE-researchers concerns about protecting their patients and thus not even reveal data from the trial can't have been that extensive..

Ah the old Phantom File thief. Wasn't that on Morse?
You would have thought in a £5million research study they'd have made backups

 

[Invisible Woman]

Ah the old Phantom File thief. Wasn't that on Morse?
You would have thought in a £5million research study they'd have made backups

....or bought a bloomin' lock for the door!

Still. It was only patient information. Not to worry too much about confidentiality....unless actual patients want to see annonymized figures....Oh wait now....

 

[Sidereal]

The deconditioning hypothesis never made any sense to me. Because my onset was step-wise up-and-down progression over many years, I never spent 'too much time resting in bed after a virus' or whatever it is BPSers believe we did to get ourselves into this state. (Actually, that's not quite true. Around 25 years ago I got a deadly GI virus and was bedbound for weeks, hospitalised for over a week. Couldn't eat, drink, IV in my arm. I felt extremely weak, orthostatically challenged and starved when I recovered enough to go home but activity did not make me feel ill in the way it does now that I have ME/CFS. I just gradually got back to normal without a second thought. No 'graded' anything and I certainly didn't require intervention from some 23 y.o. psychology graduate ditz to recondition myself.)

 

[Snowdrop]

. From my own personal experience, I can tell you that I did report GET making me worse, but the service I went to has kept no record of this.

If there is someone in the UK cultivating a relationship with a journalist I think this is an important and useful point to share. Getting it out there that the clinics do not keep track of patients in terms of how the treatment has helped or not should be an important metric. And putting it out there that they do not and that people have said they are harmed is I think something that people will relate to and that might make the clinics look less than responsible.

I quite agree my face muscles ache with smiling and also if I whistle my face muscles get really painful.

Ditto

And my perception of the size of my face and touch was all to pot plus tingling, actually my whole body was affected that way.

This has happened to me also when I was a teenager (weird distorted perceptions). I put it down to my epilepsy but having time to consider and reading here I have begun to wonder if all of my neuro problems can be traced back to having had a virulent case of chicken pox as a 3 month old infant. I've never had glandular fever/mono though.

 

[slysaint]

I never spent 'too much time resting in bed after a virus'

Me neither. If anything I probably didn't spend enough time resting in bed when I fell ill with what was later diagnosed as pneumonia.
As for deconditioning; when I was 10 I was knocked down by a car and my leg was badly broken. I was bedbound (in traction) for about a month and then spent another month in a nursing home. Still bedbound, I also got tonsilitis and an infection in my damaged leg. I was very sporty and the fastest runner at school, so was a bit upset when the surgeon told me I might not be able to do sports anymore.

I walked with two walking sticks for a while and went for physio to try and correct a limp. Less than a year after the accident I was back playing sports and the third fastest runner at school.
I didn't have any counselling or therapy..................but then if I told the BPS lot this story they would probably say
'Aha, childhood trauma'.

 

[MeSci]

I was diagnosed with Bell's Palsy at age 5, and it left me with a crooked face - much of it did not recover. I was taught to whistle as part of therapy, and became quite good at it (still am!). I don't think I get painful facial muscles. My hands, arms and legs ache from not much activity though, which varies over time.

ME did not develop until mid-adulthood.

Come to think of it, I did have two operations to try to correct the paralysis (I was pretty well suicidal about it) - one was a partial paralysis of the other side to match the affected side a bit better - that was all good - then a rather experimental transplant op using a muscle from my foot, which wasn't so successful - it stayed swollen. Didn't get ME until much later on though, so probably unconnected.

 

[Jan]

Second eta, where does the newly acquired dyslexia fit in to your theories? Why can't I read and write properly anymore, is it because I'm so unfit! It's so f'in ridiculous! Can someone please send a list like this to NICE and ask how GET and CBT will fix these symptoms?

 

[Daisymay]

Come to think of it, I did have two operations to try to correct the paralysis (I was pretty well suicidal about it) - one was a partial paralysis of the other side to match the affected side a bit better - that was all good - then a rather experimental transplant op using a muscle from my foot, which wasn't so successful - it stayed swollen. Didn't get ME until much later on though, so probably unconnected.

I'm really sorry you've had to endure all that, it must have been very difficult x

And then ME on top of that....

 

[Barry53]

On the subject of deconditioning.

At the severe end of the ME spectrum, where someone is bed bound, the person must inevitably be deconditioned. No-one can possibly be bed bound for a long time and not become deconditioned - it's how human physiology works. But the whole point surely, is that the deconditioning is caused by the ME, and not the other way round. The BPS brigade seem to see correlation and then presume causation of their own choosing.

So if your were to take a severely afflicted ME patient, it would be pointless trying to test (not sure if it is even possible) whether they are deconditioned or not, because they will be - you would just be proving the inevitable. So I'm wondering if the wrong question sometimes gets asked.

• Not "Is a severely affected ME patient deconditioned?"
  
  
• But "Why is a severely affected ME patient unable to recondition?"

So if you were to take a normally healthy but deconditioned person, and a long term severe ME patient, they would both show evidence of being deconditioned, but the big difference is that one has the ability to recondition, and the other does not. And could that be a focus of potential diagnosis?

Could I ask for your thoughts please @Jonathan Edwards. I know you have already touched on this issue recently somewhere, so apologies if I've inadvertenly plagiarised. But it just seems the crucial issue for severely affected ME patients is not so much the presence of deconditioning, but more about their inability to recondition.

Contrary to what the BPS brigade believe, if severely afflicted ME patients possibly could recondition, they would not need psychiatrists telling them to do so.

 

[A.B.]

So if you were to take a normally healthy but deconditioned person, and a long term severe ME patient, they would both show evidence of being deconditioned, but the big difference is that one has the ability to recondition, and the other does not. And could that be a focus of potential diagnosis?

But you won't find a healthy but deconditioned person (assuming deconditioned refers to a clinically meaningful state and not just being out of shape like many middle aged and older people are)