The role of low-grade inflammation in ME/CFS (Chronic Fatigue Syndrome) - associations with symptoms, 2019, Jonsjö et al

The most likely explanation is that ME causes sickness response or even sickness behaviour like taking to your bed because ME is a serious debilitating illness.

I have always been dubious when they say that if we stop acting ill we will stop being ill.

 

Whatever theses researchers are, but by no means is the question in itself rhetorical, and it would be bad research to do such an implication [].

If there is a sickness response mechanism (underlying sickness behaviour), then this mechanism could be ill, say after an infection.


[In fact, it would be hijacking the original approach to say:
Patients behave like being sick, and then the sickness response mechanism would provide them with feeling very very sick.
Sadly this approach has been done in some manner, as we are aware of.]

 

I think most of us already proved them wrong anyway.

Most of us had jobs, kids, mortgages, car payments etc and so, in the absence of advice to the contrary, tried the fake it till you make it approach to recovery. Clearly that didn't work out very well.

 

I would say, in the essential meaning of the word, yes: you feel worse soon after exertion, when you are ill.

But in ME/CFS the term may include distinct properties:

• it can appear delayed, and with a regularity - it would be a strange infection or damage which would occur, say, 24 h later, in a manner lasting for long periods.
• in normal illnesses you may turn to be tired soon enough, whereas ME/CFS might reflelct a stage where the being must be aware of not gotten eaten, a fight or flight state, not be able to concentrate on nice things
• if pacing includes that one can choose different activities at different days to avoid PEM, this would be another point not be found at least in infections.

I personally think that it´s pretty promisingly possible to deduce this properties from a normal sickness response which would be exaggerated in ME/CFS.

 

A small glimpse on the paper from page 6:

- They say to have found an association between CCL11 and cognitive impairment in ME.

https://en.wikipedia.org/wiki/CCL11

- Furthermore they say, beta-NGF would be associated with PEF, significantly negative in women, and non-significantly positive in men.

- TGF-beta has been found once again here. TGF-ß and IL-7 are found to be associated with more muscoloskeletal pain in men.

https://en.wikipedia.org/wiki/Interleukin_7

According to the intro the findings would promote the concept of a sickness response via persistent low grade inflammation. They don´t make any further interpretations, if I havn´t missed it.

Taken together, I suspect, once more a tiny tendency, without being a strong clue or biomarker.

 

As @mango wrote earlier in the thread, this study is connected to the ACT-study by the same researcher team.

Both studies are part of Jonsjö's thesis -
SICKNESS & BEHAVIOR IN ME/CFS (CHRONIC FATIGUE SYNDROME)
https://www.google.com/url?sa=t&source=web&rct=j&url=https://openarchive.ki.se/xmlui/bitstream/handle/10616/46839/Thesis_Martin_Jonsjo.pdf?sequence=1&isAllowed=y&ved=2ahUKEwjApZL-zujmAhVHwcQBHZLuCyUQFjABegQIBhAH&usg=AOvVaw24c-sblCjYiHPx-hKroPIq

From the abstract :

Jonsjö seems rather convinced behavior o
is somehow a part, either in the etiology or the maintenance of the disease :

His interest in sickness behavior is mainly in relation to psychological and/or behavioral factors. The duality of mind and body is apparently bothersome, (remind you of someone?) but the field of psychoneuroimmunology is an answer to this, making the distinction unnecessary :

He implicates more than once that symptoms are harmless and/or not reflective of severe disease, and should be addressed with behavioral treatment :

.

About their ACT method, originally developed for chronic pain :

.

 

Thank you for the quotes, emotionally difficult to read through,

even though their words are not worth much:

"in the absence of ... verfiable disease" ???? it´s rather crime to assume that there never can be found a physiological disease in ME/CFS

It is also improper not to evaluate the possibilities, e.g. one might get worse like a country lane with its holes.

 

Sounds like "old wine in new bottles" to me.

 

I'm always amazed that they seem to think that changing perspective on symptoms can allow a 'valued life' - ie continuing on with a normally functioning life - they must be completely ignorant of what the symptoms actually ARE... As if if that were possible we wouldnt all already be doing it!

Its like telling someone with a broken leg that if they simply accept that this pain is a normal part of their life (or whatever), & they can live with it... then that will mean they can walk around on their leg & although perhaps have a slight limp, it will not impede their lives. It's absurd. - As if a broken legged person cant run for the bus because they have somehow thought wrongly about their pain & if they would simply think differently about it they would be able to run after the bus in spite of the break in their leg.

I know that i for one (when i was mild) was in absolute denial that my experience indicated illness & so i carried on with my very full, extremely happy life, regardless of symptoms, I didn't think they meant anything & so I accepted them as just a bit of an irritation & went on as normal, proclaiming how great I felt..... until those symptoms became so bad as to literally prevent me from continuing they became impossible to ignore because when you're collapsed on the floor & find that you cannot get up no matter how hard you try, or how astonishing you find it not to be able to stand up, you still cant.

Changing one's perspective/beliefs/values or anything else within one's control will not have anything but the slightest impact on a person's disabilities due to cancer, MS, Parkinsons etc. It will not enable a paraplegic to walk or change the body's ability to produce/utilise insulin & therefore make a diabetic person able to eat as much sugar as they want because that is part of their accepted 'values'.

If my symptoms were amenable to such thinking/behaviour I would NOT be ruddy well laying here! I'd be out walking & enjoying the sunshine.

If all these BPS believers would simply acknowledge that belief in the idea that "if we cant find it with the most basic current methods of investigation, then it cannot possibly exist", is a belief as hubristic as it is moronic..... Then we could ALL be saved a great deal of pain & wasted effort & funds.

Edited for sense in 1st paragraph

 

It is being a bit picky, I know what you meant Spinoza577, but Dr Lily Chu, who is an authority on PEM, makes the distinction between post exertional fatigue and post exertional malaise which is what we experience with the delay, long lasting effects, immune activation etc.

She is trying to get doctors to understand that our experience appears to be unique. The way people feel if they exert when they are ill can be predicted but what we get is out of all proportion and not related to what we have done of what our illness seems to be. That is people with heart disease find their heart struggles, pain increased heart rate, breathlessness but we can lose the ability to walk because we having been adding up our accounts and we can lose the ability to do our accounts because we have walked too far.

I think it is important for us to stress this distinction until it is commonplace.

 

The CCC in fact has AN alternative: post-exertional-malaise or post-exertional-fatique.

Out of the context it seems that the authours/contributers are referring to the distinction "physical"/"mental" symptoms - which is clearly thought to differ in me/cfs even though the SINGLE symptoms are non-specific.

"single" - otherwise we hadn´t these difficulties with diagnosis, as it´s the presentation of the WHOLE thing which makes it difficult to spot the illness for man.

I hoped to have made it very clear in the following three points that me/cfs "should be" distinct.

"BUT" if you die from heart issues, then they will say and write and record that you have died from heart attacks, but not from your ME/CFS.

But in fact heart attacks are a common cause of death in ME/CFS, and ppl die almost 20 years (55 or 58 years of age, as I remember) earlier than other ppl who die from heart issues.

 

It's more about identifying what your core values are and choosing behaviors based on them, rather than changing our values. Essentially their form of ACT and CBT are the same thing, that we should stop trying to avoid experiencing symptoms (like with pacing) and increase activity, just with the added bit that it is value-based activities that should be increased. But the other parts are the same, including the preposition that symptoms are practically harmless, and it's just our brain telling us nonsense that we do best to ignore if we want to get better.
Definitely blaming the patients, in a rather condescending way, since we have to be tought that our symptoms aren't really dangerous, it's just our mind playing tricks telling us they are.

It's very confusing to read his thesis, because on the one hand PEM is acknowledged, even if he calls it a hypersensitivity to stimuli and effort, but on the other hand symptoms are portrayed as non-malignant, harmless and something we need to learn to accept. I don't feel he understands PEM at all.

I for one think it's a pity that they've hijacked ACT in this way, because used with a correct understanding of the disease it can be helpful in increasing quality of life, although it can't be used to improve function, as they aim to do.
I suspect many of us practice some form of ACT without thinking about it, I know I do. Haha, I obviously think about it since I mention it here! I have used it in the past for trauma related issues so I guess it came naturally.

If applied with a proper understanding of ME, the acceptance part should be about accepting the reality of one's situation, of being chronically ill with a very debilitating disease, and accepting the limitations that puts on your life.
And how you choose to spend your little energy, within your own specific limits, is where the value-based part comes in. What is meaningful to you is where you should put your energy, when possible. In very simple terms.

I did the same the first year of my illness, though I knew something wasn't right and was going through medical examinations, I could never have imagined it was as bad, or that exertion could be dangerous, until it was.
And this is probably true for many of us, so our lived experiences have already proven their theory wrong, which they would learn if they were to speak to actual people with ME.

 

Wow. Got it. Ignore these fools. What a big pile of tripe.

 

Old piss in new bottles, more like it.

 

I see that a lot, this framing that the symptoms are basically like the color of your hair, some thing you bear but has no actual effect, it's just a property, like the length of our arms, inoffensive and without any actual impact. I guess it makes it easier to leave us off to dry, absolves them of any responsibility in refusing to do their job, giving free rein to BS their way into believing they're helping.

Some bits of survivorship bias to it, people used to symptoms magically going away just assume this is always the case. Give it to this era of disinformation to actually manage to give rise to just about the most absurdly ignorant and harmful medical ideology, all the information in the world readily available and it produces this maximum tripe.

 

Precisely!

 

I think this is the problem with "repurposed" philosophies.

I have no problem accepting certain things I cannot change - like the weather. I can even go so far as accepting things that cannot be changed for now - like I have ME and my life being completely altered.

However, why should I accept that I should feel this way indefinitely? Why shouldn't I look for properly conducted research? Why shouldn't I seek to improve my life and health?

While one must be pragmatic about coping with what is, it should never mean that we accept our lot without trying to improve things. Which is, as I read it, the next logical step in this philosophy (not medicine).

If we all just accepted our lot without questioning then we would still be living in caves.

 

I agree completely. Nobody is saying you should. Accepting what is, is in no way opposed to simultaneously seeking ways to improve the situation. That is not what I meant, or what is meant by acceptance in general. That sounds more like defeat.

 

No @Anna H, I understand its not what you meant, but I think that's the purpose of ACT in "medicine".

They take a philosophy out of context and twist it to suit.

Edit - as in it suits them if you accept your symptoms and go away.