Cognitive and behavioural responses to symptoms in adolescents with CFS: A case-control study nested within a cohort, 2019, Loades et al

Chalder doesn't mean PEM. I remember a presentation that was discussed a few weeks ago and in it she talks about it in the context of MUS, as a generic concept to the overall idea and not specific to ME, or CFS or whatever it is she's talking about when she says "the symptoms".

It seems more closely related to some unexplained manic-depressive cycle but I have yet to see an explanation that isn't hand-waving so it can basically mean whatever one wants it to mean, which is convenient when inventing fictitious explanations.

 

I can see how it might spun but it is pretty hard to match with reality.

There isn't physiological for not increasing activity rapidly because during these 'boom' episodes they do increase it rapidly. So there cannot have been fear-anxiety stopping them either. What I think is argued is that after a boom the soreness that occurs after exercise is misinterpreted as a return of ill health, which leads to them feeling 'bust'.

But even in someone who is reconditioned running around a bit and having a good time with friends does not lead to the sort of soreness you get after a rugby training session or a route march. There is a confusion between the negative symptoms associated with high intensity physical training programs in elite athletes and what you get after larking about a bit.

My own experience of post-viral fatigue was of a sweat on my bow and a feeling of feverishness or nausea. That bears no resemblance to the symptoms of elite training and presumably reflects a continuing imbalance in cytokine signalling. You could not confuse the two types of symptoms one feels like you earned yourself a rest, the other feels like being ill.

 

Disrespect for gastropods should not be tolerated on an equal rights forum like this.

 

Leave it to these nice BPS people to alleviate you of that 'feels like being ill' idea

But yes I agree. Goes for sore muscles as well. The 'after using them more than they are used to' pain is worlds apart from the heavy drained no-energy-to-move soreness of PEM. Good thing we are wrong about stuff in general so these inconvenient differences can be swept under the rug...

ETA: with 'nevermind what the patient says' it gets just way to easy to transform reality to whatever-they-like. It's not hard to understand what is wrong with this, but getting people to actually look at it instead of 'the experts will know best' is. Very frustrating.

 

Precisely.

The experience of having done more than one is used to, regardless of how much more, is vastly different than the experience of feeling ill. As with the feeling of being very tired - not the same as feeling ill.

It can be repeated until we're blue in the face. In their world patients cannot be reliable witnesses to that difference. If they think it's the same then the people actually experiencing it must simply be wrong. And since with Oxford etc they made it easy to misdiagnose lots of people who do "merely" feel tired rather than ill, they have aided themselves in being deliberately obtuse on this point.

 

Exactly. I’ve never understood it.

Years ago my family and I climbed a mountain, yes I could do it, infact I was actually fitter than a couple of couch potato healthy people who had to take many rests and visibly struggled, I beat them to the top. On the way down I started up feel the bites of ME but it was the next days I was confined to flat or car hardly able to walk with sickness PEM whilst the others were out and about as normal. Like me they weren’t used to heavy exertion, unlike me then, they were VERY inactive on a daily basis yet I got the classic ME attack on exertion and they got virtually nothing. The only explanation for that as far as i can see is some major physical abnormality in me That was the ME. Sure poor management is a perpetuating factor but the BPS lot, especially chalder just ignore that major physical abnormality making the careful management a necessity in the first place , infact treat the belief in one as a negative illness belief. And that abnormality didn’t develop from rest as it was there right from the start AFAIC and then I wasn’t resting at a hugely unhealthy level. It’s loony land and I cNt understand it as their patients must be recounting endless examples like mine.

edit, I suppose you could argue that boom and bust creates a sensitised nervous system but that then would be genuine obstacle to activity not about catastrophising etc. Particularly in the paper the emphasising of “damage beliefs” as negative in an illness where short term exertion results in flare not proportional to activity and long term repeated uncomfortable exertion seems to result in decline, seems very wrong.

 

The feeling after exercise, which most people experience, is often called "post-exercise high" or some variation on the theme. It feels AWESOME. Even the soreness feels amazing to many people, it sure does to me and I crave it. Some people basically get addicted to it.

To suggest that it's possible to confuse this feel-good sensation with flu-like symptoms and energy depletion requires a complete disconnect with reality and the human experience. I don't know if it's that none of the people involved in this type research are capable of empathy, of experiencing reality outside of their own perception, but it's difficult to tell the difference.

May as well suggest laughter is a sign of discomfort because they don't personally find humor appealing at this point. It just shows a farcical understanding of human nature and an inability to interpret other people's motivations and intentions.

 

LOL

 

The qualitative experience of PEM has nothing to do with the usual muscle soreness and elevated mood after exercise. Nobody would confuse muscle soreness with an illness.

I can get muscle soreness without PEM and PEM without muscle soreness. They are distinct processes. At least for me.

 

The other thing is I never understood why there would be a "boom" if patients have an unrealistic fear of activity. the model presumes they overcome that unrealistic fear every time they do too much and boom. Then they apparently reacquire the fear. It makes no sense.

 

Wasn't there just another study using similar or same data from Chalder last month?

 

Duh! yes, I blogged about it as a stupid study!

 

I wrote on Facebook;
If an adolescent DID NOT have 'negative thoughts' coping with 'CFS' or 'cfs' ... (I believe that is of significance), I suggest they would be 'delusionally abnormal" or on happy pills or substances!
Perhaps TC should be acquainted with this?

https://www.psychologytoday.com/gb/...03/early-adolescence-and-the-negative-mindset

Early Adolescence and the Negative Mindset
Entering adolescence requires a painful rejection of oneself as child.
Posted Mar 19, 2012
In addition to more disorganization (distractability, messiness, and forgetfulness), what notifies parents that early adolescence has begun is the young person's more negative mindset, or what they often say is his "bad attitude." Early adolescence usually begins between the ages of 9 and 13. At this juncture, parents wonder what has happened to the child who was full of enthusiasm all the time and such a pleasure to live with. Now it's like someone pulled the plug on the young person and all that positive energy for fun and constructive activity has been drained away.

 

Similarly, if ME/CFS were perpetuated by 'unhelpful beliefs' we would expect the success rate of CBT/GET to be so much higher. When it comes to other phobias, a quick google search suggests CBT practitioners claim success rates of 60% to 90%. And that makes sense: demonstrate that belief is false / fear is irrational; patient agrees; patient cured. Also, one would expect the outcome to be more binary - either the phobia is cured or not - whereas most 'successful' trials of CBT show only a minor improvement, which doesn't make logical sense.

I think the only false belief being shown in this study is the authors' belief that correlation means causation.

 

Is there a word for repeatedly suggesting that the correlation may be indicative of a cause, acting like it does, but without comitting to clearly saying so?

Erm weasel words maybe?

 

To return to the comparison with asthma, in addition to problems matching severity of impairments between contrasting conditions mentioned, my perception, which may be totally inaccurate, is that doctors have a reasonable understanding of this condition and a well evaluated repertoire of pharmacological management tools, that there are effective tools for managing the symptoms of this condition and effective strategies to deal with severe attacks.

In contrast ME/CFS is not understood by most doctors, there are no demonstrably effective treatments or management strategies for the condition over all and no treatments at all for crashes/PEM. Further the preferred management strategies of GET and CBT are at best ineffective and at worst harmful.

So I wonder which group would you expect to have more 'negative thoughts'.

I remember vaguely a very old study on depression that set out to prove that depression was the result of irrational pessimism, but came to the conclusion in contrast that the non-depressed comparators were irrationally optimistic. How can any study address the impact of 'negative thoughts' unless there is a meaningful way of evaluating how rational those thoughts are? As people say above, this study conflates the researchers beliefs/prejudices about ME/CFS with an objective evaluation of the 'negative' nature of the subjects' thoughts. If these thoughts are accurate can they meaningfully be described as negative?

 

I note that the CFS patients were 'consecutive attenders at two specialist CFS units'. Assuming they were already on a treatment program it seems to me highly likely that they had already been fed information about what negative thoughts they were supposed to have. As CBT clients they were required to buy into this analysis.

So as far as I can see the researchers may simply have been playing back what they had told the patients themselves.

 

this would be so easy to (dis)prove with a proper study:

6 weeks (GET and CBT and REST) for moderate and severe patients
(while hospitalized)

taking mental and physical status daily

? ? ?