I am not sure whether this is helpful - see attached.

Thanks Geoff;  I have not found this paper before - is it published somewhere? I think it probably gathers and expresses everything that still confounds people who deal with the CFS symptoms now still, some 15 years later. Is it ok for me to send this paper to the local CFS/ME support organisation, as I believe it would be helpful to CFS sufferers as well as parents and caregivers to CFS sufferers. Making sense of the "not-knowing" early in the journey may be very therapeutic for them?

yes, it was published in much reduced form, which I was not happy about - The Limits of Medicine and the Social Consequences for Sufferers of Chronic Fatigue Syndrome. Australian Journal of Primary Health, (with J. Pinikahana & N. Millen) 8, 2, 2002. And yes, please pass on the original report to any people that it may help.

Thanks so much Geoff, it is a pleasure to read the full version.

     Peter Rowe at Johns Hopkins University has been collaborating with a physical therapist to look at body-based contributors to CFS symptoms.  I've attached one of his papers.  

     If you're interested in anecdote, I've found (small N) that qi gong and tai chi have been less likely to trigger a rebound worsening of symptoms than other forms of exercise.  

Griffith Health Institute at Griffith University, Gold Coast, Australia runs a CFS/ME Specialised Clinic that runs out of the National Centre for Neuroimmunology and Emerging Diseases.  As a GP, I've been referring some of my CFS/ME patients to them and there has been some mention of ongoing research projects looking into different treatment regimes.  Good to know about the qi gong and tai chi.

If CFS was a disease it would require medical treatment, however, CFS may be only a defense mechanism – see my ‘viewpoint’ in ResearchGate [note: I am both a scientist in ‘exact physiology’ and former ‘CFS patient’ for over 5 yrs].

I [and physicians] had treated my own CFS as a disease for 5 years and ... my condition was more and more worse [at the end, I was able to go to my institute only once per month for a few hours].

Perhaps because of a ‘mental fog’ I needed 5 years to analyze everything, i.e. both scientific literature and own ‘observations of myself’ such as properties of my physiology (known either as the patient or researcher from my own work), history of relation between fluctuation of my condition and my too high activity just before CFS, and the relationship between various factors and my condition during CFS; but when I found the solution, only one month was necessary to win with CFS! [certainly, I needed several months – or rather 1-2 years – to return to ALMOST normal activity but one month was enough to terminate all CFS sufferings].

I suppose that experience of a person who is both a former CFS patient and researcher in physiology winning CFS due to his profession should be taken into account.

 Thanks all of you. Interesting to know these things. Tomasz, I am not sure how to see your VIEWPOINT in ResearchGate, can you provide a link to it for me?

Jeanette Arnold

Dear Jeanette,

in general, you can search me in Research(gate) :) or directly in Google writing: golczewski viewpoint researchgate. 

This particular viewpoint is at:

https://www.researchgate.net/publication/264120410_Viewpoint_Chronic_fatigue_syndrome_-_is_this_illness_a_physiological_defense_mechanism_rather_than_a_disease

Note that this viewpoint was written for Journal of Applied Physiology [JAP] as a kind of short form article called 'Viewpoint' by this journal. Unfortunately, rewievers perhaps did not know the format of "Viewpoint" and thus this article was rejected because of several negative comment like: "there is much more numerous literature", "problem discussed too generally", etc. I had no time to discuss with rewievers, to change the form, etc. therefore - since ResearchGate encourages to publish unpublished :) works - I have added pdf from JAP.

Summarizing: my viewpoint is not a 'normal' article, it is a specific form of JAP

Article Viewpoint: Chronic fatigue syndrome - is this illness a phys...

 Tomasz, I thught you may be interested to knw about this....

An interesting approach I have been made aware of is named "The Lightening Process" in UK, Australia and NZ (Publication - a book by Phil Parker "An Introduction to the Lightning Process").  Anecdotal reports of successes on the emotional, psychosocial levels.....leading to recovery physically too. Uses aspects of Cognitive Behaviour Therapy, aspects of Neuro-linguistic programming and some thought stopping and breathing techniques....for a mind-body approach. Website in Auckland, NZ is http://www.empowertherapies.co.nz/the-lightning-process-package.

I am constantly challenged as to the physical/psychological balances involved.

Dear Jeanette, thank you for that information.

However –in my opinion - CFS is neither emotional nor psychical nor psychosocial nor similar problem. Certainly, such problems appear in CFS but as a kind of result or side effect not as the reason. Thus, treatment results instead of reasons is not a very good way; like with fewer (which is also accompanied with some emotional/psychical ‘malfunctions’!, moreover, for the same reason!!!): too high body temperature may be treated but if a patient started to feel ‘too well’ he/she would start to ignore the fewer reason (=the true disease) and worsen own state.

Jeanette, There is definitely a group of physicians and scientists who think CFS/ME is psychosomatic. They think this, I believe, because there is at present no objective test for the disease, and standard blood work often finds everything within or near normal limits. In my experience, every scientist who has a close friend or a relative, whom they knew both before and after CFS/ME changed their lives, is absolutely certain this is an organic disease.  It's the harrowing transformation of an energetic young person to someone unable to hold a job, or worse, to someone bedridden and unable to perform the simplest tasks that convinces us. Some of us are so certain of this that we are investing an enormous fraction of our waking hours seeking the mechanistic basis of this disease in an effort to propose a cure.

Robert is correct in identifying the group of physicians and scientists who believe that CFS is psychosomatic.  More specifically, they believe that CFS is due to illness cognitions with the implication that all you need to to is stop thinking you are ill.  Of course, this explanation is still technically organic as minds don't occur without bodies.   The difficulty some of us have who discount this mechanism (I have recovered from CFS) is showing that the psychosomatic explanation is wrong.  I have just resubmitted a paper to that effect - based on my theory that CFS is a network problem.   Specifically, the theory proposes that disease mechanisms are  almost entirely causally unconnected whereas there is another sort of mechanism that is strongly causally connected, and so exhibist the emergent properties of a complex system.  We have been able to publish the idea as a narrative for patients - but using a simplified description - but my aim is to show that the network of biological mechanisms is the correct explanation.  The difficulty is getting this idea past referees - psychologists don't like it because it is non-psychological and biologists don't like it because it deals with emergent properties of a biological system, rather than finding 'the little bit' that happens to be wrong.  The paper I have just resubmitted (and not to a high prestige journal) shows that data are consistent with the network but not the psychosomatic mechanism.  I am attaching the narrative paper which gives a flavour of the work we are doing. 

Roberrt has written: "every scientist who has a close friend or a relative ...".

Am I only scientist who has not any close friend or relative but was personally suffering from CFS? My experience on CFS is based in a large part on own illness and I am absolutely sure that CFS has not any psychical reason [different than too high activity before].

Tomasz, From your own experience with CFS, can you tell whether every cell in your body was acutely switched to a CFS phenotype, or do you think that one cell type or organ system was affected first and others became dysfunctional later? I have heard that some CFS patients have lost strength in only a specific set of muscles while other muscles in the same patient are unaffected. What is your experience?

Robert, since you are from Integrative Bioinformatics, perhaps you can understand the following description in terms of physics: CFS disturbs neither the power nor the force; it decreases the ‘amount’ of energy possible to be used. Thus, even great power/force could be developed but for very short time; then since the ‘accumulator’ is totally discharged, malaise typical for CFS appears.

If a patient observes such symptoms as you have written [and any ‘normal’ diagnosis is not made] I would rather suggest Lyme disease, for example, than CFS.

Tomasz, Yes, your physical description is completely clear. It sounds like you might also say that the fuel is limiting. This is what makes many of us hypothesize that ATP, the nearly universal form of biochemical free energy, is inadequate in CFS cells. In turn, this focuses our attention on mitochondria. The question, then, is what could be wrong in CFS mitochondria that could account for CFS symptoms. It's my understanding that mitochondrial disease specialists find little wrong with mitochondria from CFS patients.

Robert,

maybe mitochondria have some impact in CFS but – I suppose – pain in different places cannot be explained by them [my knowledge related to mitochondria is too be sure therefore I have written “I suppose”] unless mitochondria and the adrenal axis are closely related. See my viewpoint at ResearchGate to know my concept.

Tomasz,

I recall you suggested some time ago now, that CFS may be a response the body/mind together, a biophysical response developed regarding other stresses and impacts. Have I read you correctly at all there?

Jeanette,

in my opinion [and own experience as the patient in the past] CFS appears when the organism ‘works’ chronically too hard and has not enough time to rest (to restore the homeostasis). The term ‘work’ may mean here both physical or mental activity, (bio)chemical stimulus (including infections as well as alcohol, for example), etc. i.e. all what were called stress but by Hans Selye (not journalists).

According to my concept of CFS, it is approximately a kind of the third stage of Seyle’s General Adaptation Syndrome.

On the other hand, according to my general concept of psychosomatic interactions which I have tried to spread for years [without success:( ], ‘mental feeling/state’ is a kind of ‘read-out’ of the organism state by the psyche. For example: in some older laptops, when their accumulators were low-charged, they started to work slower [to protect the accumulators to be totally discharged]; and from the computers’ psyche, they were fatigued but the real cause was related to hardware; and thus it would be stupid to treat the laptop velocity (instead of accumulator) because it would worsening the laptop state, not improve. In my opinion the same is with CFS.

Thus, fatigue and other ‘mental’ symptoms in CFS are the shadows in the Plato’s cave.

Sorry for such philosophical and cybernetic explanations but I am an educated biocyberneticist :)

Thanks for your comments and reflections Tomasz