Central sensitization: a matter of concern

[ME/CFS Skeptic]

We are living this nightmare in my community.

Sorry to hear that. Where are you from, exactly? (if you rather not tell, for privacy reasons that's ok).

In advocacy you might point to Muhammed Yunus' 2015 article (where he drops ME/CFS from his CSS-theory): https://www.ncbi.nlm.nih.gov/pubmed/26138918.

Yunus is the originator of the CSS theory and the one who has most promoted the concept. So the fact that he states there's simply not enough evidence for CS in ME/CFS, should open some eyes...

“Despite the fact that chronic fatigue syndrome (CFS) (systemic exertion intolerance disease) clinically overlaps with other members of the CSS family, definitive evidence of CS in this disease (excluding those having pain) is lacking, and was, therefore, not included.” [32]

Some background on this quote: with the wording "excluding those having pain", Yunus means that most studies looking into CS in ME/CFS, did not exclude fibromyalgia (where the evidence for CS is more solid). So it remains unclear if reported results are due to this comorbidity or not. In fact a couple of CS-studies have only looked at ME/CFS patients with chronic pain (pain was used as a selection criterium).

 

[anniekim]

Once again though, the theory that we get signals from our muscles way before they reach our limit is looking at ME from a very restricted point of view. The types of pain suffered varies tremendously: muscle pain is only one component, and often muscles can ache as a result of too much cognitive effort. There is also a wide variety of what I would call "nerve" pain – electrical tingling, over-sensitivty, stabbing etc. Add to that various forms of head pain and digestive disorders.

It's as though these folk have no real concept of the full-body impact of ME, and are taken off track by the term "chronic fatigue syndrome".

Absolutely, fully agree. Tim Noakes theory I referred to discussed in Marchant’s book about CFS shows he has a a very poor understanding of how ME affects the body and wrongly focuses on fatigue alone. As we know, ME, is a multi system illness with a myriad of symptoms and further post exertional dysfunction, it’s not simply fatigue. As you said, pain can increase from cognitive exertion alone. I wonder if the athletes he worked with who complained of fatigue had over training syndrome as opposed to neuro immune ME.

As Michiel’s post has shown the alarming fact is that medical organisations are now pushing clinical guidelines in a few countries, knowing the deconditioning theory for ME is dead, on an alternative unproven theory so they can continue recommending harmful graded exercise/activity.

Edit:

I have edited to add if I have understood the central sensitised theory corrrectly about the energy problems in ME, it is not saying that the muscles send signals to the brain too early that they are fatigued but that the brain itself makes the body feel sensations of fatigue. That is how Noakes described it for his theory of ‘fatigue’ in ‘CFS’. As said, pwme experience much more than simply fatigue.

 

[anniekim]

Yunus means that most studies looking into CS in ME/CFS, did not exclude fibromyalgia

Also muscle and nerve pain can be part of the ME symptom picture and may not be co mobrbid fibromyalgia

 

[anniekim]

First of all the symptomatology matches the theory. Widespread pain can be a severely debilitating aspect of ME/CFS and many patients display an increased sensitivity to light, sounds or chemical substances [17].

Also aren’t there possible other causes for sensitivity to light, sound etc than central sensitisation? Do people with brain damage or inflammation also experience sensory sensitivity?

 

[mango]

It seems to me that CSS is one of the worst wolves in sheep's clothing at the moment, as it appears to successfully fool even many well informed pwme and patient representatives, even people who are otherwise fully aware of the problems with BPS and MUS etc. I find that very worrying.

As far as I can tell, most people seem to perceive what they believe to be the main idea of CSS -- amplification of signals in the CNS -- as something completely neutral and harmless.

What really boggles my mind is that even after reading articles on CSS treatment programs -- that literally says things like ”It addresses negative thinking, maladaptive emotions and cognitions, avoidance behaviors, and catastrophizing. Hypervigilance, health anxiety, and somatization are reviewed.” (Fleming et al, Rambam Maimonides Med J., 2015) -- many of them are still unwilling to let go of their "neutral and harmless" attitude towards CSS. Why is that?

Here's a roughly translated quote from a discussion I had with a patient organisation representative not too long ago, that I find quite telling: "I consider it problematic to filter out [that is, be critical towards] "central sensitization" since so many people with ME are very sensitive to sounds, light and smells. CSS is of course not the same as ME, but sensitization is obviously a significant part of the symptoms."

So, once again at least part of the problem seems to be that the BPS people have taken a common word/concept that has a certain meaning (neutral, harmless...) to people in general, and then they give it a completely different meaning. It seems most people don't care to look deeper than the surface, they don't bother finding out what the word/concept actually means to the BPS people, or how it differs from their own understanding of the word. This kind of "wordplay" is hugely problematic, in my opinion.

Another example is a proposal that has been submitted to the Riksdag (the Swedish Parliament) a couple of times the last few years. The proposal is titled "Recognition and support for patients affected by ME/CFS and IBS" and has some good parts to it, but they question whether ME/CFS, Fibromyalgia and IBS are individual illnesses, and suggest that the proposed increased investment in research should be based on the central sensitivity syndromes model. In the discussion groups I am active in, most people were very happy and refused to consider that this would potentially lead to more (B)PS research, rather than research based on the biomedical understanding of ME.

 

[Graham]

In many ways this reminds me of the suggestions made to us as maths teachers that it was pupils' fear of the subject that held them back. On the surface, that was a reasonable statement to make, because many people are afraid of maths. But the real reason they find maths scarey is that they were taught badly in the early stages, and naturally became bewildered as time progressed. They then assumed it was their fault, and started to fear maths. It was only by digging way back into the very basic ideas, finding their misconceptions, rebuilding them and reassuring them, that they gained confidence: a long, slow, and labour-intensive process.

If sensitization is a problem in some areas (such as light), what caused that sensitization? If folk have no idea, then letting them "fix it" with CBT or various similar alternatives is about as sensible as letting them fix your car because the engine has stopped.

 

[anniekim]

Agree @mango, CSS theory for ME is not harmless as evidenced with claiming CBT can challenge negative thoughts that in some weird and magical way are effecting the brain signals. These sensitised brain signals are allegedly according to the CSS theory also causing the exertion problems and can be overcome by desensitising the brain registering exertion as harmful through gradual increase of activity. The final result of the CSS theory for ME is the same useless and often harmful CBT and GET treatments.

Also has science definitely shown that sensory sensivity, noise, light intolerance etc, which most people with ME get to varying degrees, can only be caused by central sensitivity with no structural damage? As Graham says what is causing the sensitivity to light, noise etc ? Could there be brain tissue damage/poor blood flow to the brain due to low blood volume that is causing the sensitivity to light, noise etc?

Danish psych, Per Fink, promotes central sensitivity as a unifying theory for a few conditions including ‘CFS’. It’s based on no evidence that these different conditions have the same underlying mechanism.

 

[Sean]

This kind of "wordplay" is hugely problematic, in my opinion.

Demons –> Witches –> Vapours –> Hysteria –> Neurasthenia –> ME –> CFS –> BPS –> MUS –> CSS –> ?

Progress?

Somebody is profiting from this shitty game with words.

 

[Milo]

Sorry to hear that. Where are you from, exactly? (if you rather not tell, for privacy reasons that's ok).

Canada

In advocacy you might point to Muhammed Yunus' 2015 article (where he drops ME/CFS from his CSS-theory): https://www.ncbi.nlm.nih.gov/pubmed/26138918.

I read the abstract, not the paper. The abstract omits ME/cfs. He did not explicitly exclude it. I am not entirely sure whether he mentions it in the paper but unless he writes a paper with “ME/cfs is a physical illness and not CSS” I will still kick and fight against CSS.

CSS is simply meant for patients to stop searching and embark on their psycho-social journey to learn how to stop their brain from freaking out. The concept of it is meant to confuse physicians, to stop researching biological causes and expensive treatments and drugs. It is very harmful for all of the diseases that are in the margins of health care. It is also a very misogynistic concept.

 

[ME/CFS Skeptic]

what caused that sensitization?

what is causing the sensitivity to light, noise etc ? Could there be brain tissue damage

CS, as it has been shown in experimental research, is always related tot tissue damage and inflammation. All sorts of neurotransmitters like substance P, prostaglandins and glutamate are then released at the site of injury that makes the CNS more susceptible to pain stimuli. When the Belgian research group around Jo Nijs en Mira Meeus
– the major researchers of CS in ME/CFS – started investigating CS in the middle 2000's, it was predominately in these terms that they explained their motives: 'lots of infections like mycoplasma have been associated with ME/CFS, so it is worthwhile to take a look at CS'. This is also the line of thought of Yarred Younger who connects CS with low-grade inflammation in the brain.

The whole theory that central sensitisation is caused by psychological processes is mere speculation and not evidence based. They usually point to research which shows that people with phobia's are primed to words related to their fear. So a person with arachnophobia might take longer on a cognitive taks if the word he's working on is related to spiders. Then they say that person is 'sensitised' to these words and try to prove the same thing for CSS-patients and pain. This form of attentional bias and catastrophizing may be a phenomenon worth researching, but it shouldn't be confused with central sensitisation.

 

[ME/CFS Skeptic]

The abstract omits ME/cfs. He did not explicitly exclude it.

ME/CFS was part of Yunus' CSS-theory for years and now he omittted it because, in his own words, there is insufficient evidence for CS in ME/CFS. So you might use that in advocacy to challenge any doctor/researcher who classifies ME/CFS under CSS.

 

[anniekim]

CS, as it has been shown in experimental research, is always related tot tissue damage and inflammation. All sorts of neurotransmitters like substance P, prostaglandins and glutamate are then released at the site of injury that makes the CNS more susceptible to pain stimuli. When the Belgian research group around Jo Nijs en Mira Meeus
– the major researchers of CS in ME/CFS – started investigating CS in the middle 2000's, it was predominately in these terms that they explained their motives: 'lots of infections like mycoplasma have been associated with ME/CFS, so it is worthwhile to take a look at CS'. This is also the line of thought of Yarred Younger who connects CS with low-grade inflammation in the brain.

The whole theory that central sensitisation is caused by psychological processes is mere speculation and not evidence based.

Thank you for that helpful explanation, it has clarified things further for me.

 

[Graham]

I'd like to see a study that looked at people with ME who fall ill with other conditions, and their recovery/reactions compared with otherwise healthy folk.

 

[anniekim]

This form of attentional bias and catastrophizing may be a phenomenon worth researching,

I take it you mean the phenomenon may be worth exploring for phobias? Something of course completely separate and different to ME.

Once again really appreciate you writing this thread. It’s really important people know the dangers of the CSS model for ME which is being promoted in many quarters.

 

[deboruth]

Going back a few decades, workers in industries like printing and railroads fought unemployment wrought by technical change by negotiating for non-working union members to be assigned to shifts and paid whether or not they worked. This came to an end, but at least while it was happening it was a transparent measure that did not perpetrate morbidity or cause mortality. Psychiatrists, alas, are not as honest as industrial workers. Rather than openly pad shifts they design elaborate ruses supported by corrupt journals, institutions and governments, in which they victimize seriously ill patients with gobbledygook un-baked theories and enforce harmful regimes like GET to insure their continued salaries and growing ranks. These psychs are guilty of assault, harm, and even causing loss of life -- all in the interest of enhancing their own wage packets. And bravo for warning of this latest emerging con, Michael Tack.

 

[deboruth]

By the way, at Invest in ME last June Jim Baraniuk from Georgetown reported on trials done for NIH that showed that PWME indeed were feeling more pain when certain amounts of pressure were applied than did controls. And before gall bladder surgery 18 months ago, when I (a PWME) was assigned a foursome room next to stairs and across from nurses station, the cacophony of beeping that now attends American hospital medicine and monitoring not only offended my ears but also sent my blood pressure up from a normal 110 to a noise-boosted 180 (referring to the top number.) My doctor took this seriously: I was reassigned to a quiet single the following morning, and no-one suggested I try CBT or GET.

 

[Mithriel]

I suspect that people with ME feel more pain in the same way pressing on a bruise hurts more than pressing another piece of skin, but that they put up with a higher level of pain because they are used to it.

On the sport physiology thing, there was a confused article in the New Scientist years ago about this. They spoke about the way marathon runners manage fine up a hill at the end of the route if they know it is there but if it is unexpected they struggle. The theory was that the body always brings in fatigue before it has to and they were trying to exploit that for sportsmen. It speculated that the same thing was happening in CFS. The signal was given before the body actually needed it.

It was a confused article because they also discussed the way that some cyclists had died because they used cocaine to stop them feeling fatigue. The drug stopped them getting the signal to stop so they continued until their body could take no more and shut down.

My own thoughts were that we feel fatigue because our bodies are damaged and it is a protection. The Workwell work showing our aerobic respiration is broken fits well with that. Even brushing our teeth can use so much available energy we have as little left as a marathon runner at the end of a race. Doing anything to stop our fatigue or rev up our systems without curing the underlyiing disease could be dangerous and my be why people with ME have died doing exercise.

Paul Cheney said that his systolic cardiomyopathy did not make him slow down so his heart burned out and he had to have a transplant but the diastolic heart failure he found in his ME patients made them fatigued so they did not over strain their hearts.

 

[MeSci]

And before gall bladder surgery 18 months ago, when I (a PWME) was assigned a foursome room next to stairs and across from nurses station, the cacophony of beeping that now attends American hospital medicine and monitoring not only offended my ears but also sent my blood pressure up from a normal 110 to a noise-boosted 180 (referring to the top number.) My doctor took this seriously: I was reassigned to a quiet single the following morning, and no-one suggested I try CBT or GET.

I was assaulted by a similar cacophony last time I was in hospital, when I was in an isolation room - I think there were 4 different beeps going off at irregular intervals, which eventually drove me to the window, wondering whether there was a way to jump out and end it all! (I was in for a physical illness.)

But I wasn't the only one bothered by it - people in the ward opposite were complaining too.

One alarm was just on the TV!!!

Thanks for reminding me of one of the many reasons why I need to avoid hospitals.

 

[ME/CFS Skeptic]

In 2013 Leonard Jason wrote a chapter on central sensitisation in ME/CFS in this book (P73-93): "Encephalitis, Encephalomyelitis and Encephalopathies: Symptoms, Causes, and Potential Complications (Neuroscience Research Progress) 1st Edition by Andrew Ruiz (Editor), Douglas Fleming (Editor)."

See: https://www.researchgate.net/public...ion_and_kindling_for_chronic_fatigue_syndrome

Does anyone have access to the text?

 

[Colleen Steckel]

It seems to me that CSS is one of the worst wolves in sheep's clothing at the moment, as it appears to successfully fool even many well informed pwme and patient representatives, even people who are otherwise fully aware of the problems with BPS and MUS etc. I find that very worrying.

I couldn't agree more. It is becoming apparent this is going to be the future battle we face as long as the two diseases ME and CFS are mixed together. (IOM states these are two conditions that they combined for their report).

I would put forth that ME as per Ramsay and the ICC descriptions would hopefully leave no room for CSS diagnosis or treatment. As long as we are not being clear about the disease we are talking about the door is wide open for CSS to become the vehicle for behavior modification treatment.

We know behavior modification treatment (CBT, GET, Diet, Pacing) is all much cheaper than the antivirals, IVIG, ART, and the testing that should be done to watch for reactivated viruses. NONE of that has anything to do with CSS.

In my experience, ME pain stems from multiple areas of malfunction in our bodies:
1. Oxygen exchange malfunction leaving muscles and tissues full of lactic and carbonic acid (antioxidants help mitigate this issue but there is no avoiding using muscles no matter how little we do.)
2. Brain inflammation leading to pain signals.
3. CNS damage.
4. Headaches from toxins released from muscles filling blood stream

None of those have anything to do with CSS. We need biological treatments for ME which is a biological disease.

Unfortunately, the financial incentive to push everyone into a "big tent" and then force behavior modification treatments on everyone has worked well for 30 years and the powers that be are not going to change their behavior unless patients insist they recognize ME for what it is.