• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

New PACE paper, more SMC spin.

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
Its a really strange model. Firstly it assumes pain is absent without activity. Secondly it assumes only one motivating factor in a decision. Even if there were such thoughts there would be other thoughts motivating or necessitating activity and these would need to be included in a model.

Spot on. In real life avoidance (of pain, fatigue, nausea, IBS or whatver) isn't an option due to trivia like earning a living. Non avoidance/confronting or 'pushing on through' doesn't lessen the discomfort one bit.
 

chipmunk1

Senior Member
Messages
765
to me it seems they just copied the biopsychosocial model of low back pain(or an other psychosomatic condition) from the eighties and nineties and sell it as a ME cure.

http://www.researchgate.net/publica..._back_pain/links/0046352e90d5723237000000.pdf

Deconditioning in Patients With Low Back Pain
It is clear that elevated fear avoidance beliefs contribute to the potential of disability. However, those patients with fear avoidance beliefs often present with decreased levels of activit

Deconditioning syndrome was developed in the mid-1980s as an explanation for the intolerance to physical activities with a progressive decrease in functional abilities.[39] It has been assumed that patients with chronic LBP often have low levels of aerobic fitness and are deconditioned.[40,41] Although it has been established that active physical deconditioning significantly decreases maximal oxygen uptake,[42] this has not been correlated in patients with LBP. Patients with chronic LBP present with decreased aerobic fitness level when compared with the normative population.

Fear Avoidance Beliefs
Avoidance and fear about moving after the onset of an episode of LBP are common. Reports indicate that up to 40% of those with LBP have reduced leisure activities as a result of their symptoms.[15] Most individuals afflicted with LBP fall within a wide range of behavioral responses, varying in nature from confronting their symptoms to avoidance of activity. Although avoidance of high-level activities may be necessary, absolute avoidance can lead to chronicity and impairments.

http://www.medscape.com/viewarticle/587890_5
http://www.medscape.com/viewarticle/587890_4
 
Last edited:

A.B.

Senior Member
Messages
3,780
What does confronting their symptoms even mean? How do you confront back pain? I don't think they mean any medical interventions because there is a verb for that: "treating".
 

chipmunk1

Senior Member
Messages
765
What does confronting their symptoms even mean? How do you confront back pain? I don't think they mean any medical interventions because there is a verb for that: "treating".

It's not about confronting the pain it's about confronting the fear of activity that many with back pain are said to have.

They believe lack of activity causes or contributes to back pain and confronting the fear of activity or exercise will solve the problem.

They also believed deconditiong causes or contributes to back pain and exercise/activity would solve the problem.

Almost identical to the theories of Chalder et al. It's just the the back pain somatisation researchers were there well before Chalder i suppose.
 
Last edited:

biophile

Places I'd rather be.
Messages
8,977
http://www.slideshare.net/jamesccoy...ing-bears-when-we-only-find-scat-in-the-woods

Negative emotion and health: why do we keep stalking bears, when we only find scat in the woods?

James Coyne, Professor at University Medical Center, Groningen (UMCG), the Netherlands

Published Apr 09, 2014

Describes the frustrating search for a link between specific negative emotions and health and why the search often fails. Integrates epidemiology and psychology.

Selected slides:

4. For over half a century, researchers in psychosomatic medicine have stalked an elusive trophy bear, a modifiable connection between negative emotion and morbidity and mortality. Claims of finding one have attract considerable attention again and again, only to lead to embarrassing disconfirmations.

14. John Ioannidis: Most “discoveries” in biomedical literature are premature, exaggerated, or simply false. Apparent discoveries are created and perpetuated by a combination of confirmatory bias, flexible rules of design, data analysis and reporting, and significance chasing. Beware of unexpected large findings from small samples.

15. The psychological sciences may be particularly susceptible because many of the psychological variables and outcomes measured and analyzed are often convoluted, complex, and highly correlated. There is large flexibility in definitions, uses of cut- offs, modeling, and statistical handling of the data, hence large room for exploratory analyses.

16. John Ioannidis (2012) Obliged replication: Proponents of dominant view are so strong in controlling the publication venues that they can largely select and mold the results, wording, and interpretation of studies eventually published.
 

Min

Guest
Messages
1,387
Location
UK
Notice how, in the narrative, they neatly link the issue of ME/CFS patients' psyches to the alleged death threats, implicitly suggesting that the one or two alleged death threats somehow reflects on the entire ME/CFS population and therefore reflects on a ME/CFS diagnosis. I think that's what's known as a slur on a patient community.

Like these newspaper articles. the "hate mail" and "death threats" are propaganda deliberately fed to the media to denigrate an entire patient group and to put off anyone considering doing biomedical research.

No evidence is ever produced of the death threats etc. , just hearsay, and no M.E. patient has ever been prosecuted. The doctors concerned should be very ashamed.
 

Dolphin

Senior Member
Messages
17,567
It's not about confronting the pain it's about confronting the fear of activity that many with back pain are said to have.

They believe lack of activity causes or contributes to back pain and confronting the fear of activity or exercise will solve the problem.

They also believed deconditiong causes or contributes to back pain and exercise/activity would solve the problem.

Almost identical to the theories of Chalder et al. It's just the the back pain somatisation researchers were there well before Chalder i suppose.
Exercise decreases the pain threshold in ME/CFS. It has the opposite effect in many other conditions. So even if models for other conditions may have some value, that doesn't mean they have a value in ME/CFS.

Pain. 2004 Jun;109(3):497-9.
Exercise lowers pain threshold in chronic fatigue syndrome.
Whiteside A1, Hansen S, Chaudhuri A.
Author information

Abstract
Post-exertional muscle pain is an important reason for disability in patients who are diagnosed to have Chronic Fatigue Syndrome (CFS). We compared changes in pain threshold in five CFS patients with five age and sex matched controls following graded exercise. Pain thresholds, measured in the skin web between thumb and index finger, increased in control subjects with exercise while it decreased in the CFS subjects. Increased perception of pain and/or fatigue after exercise may be indicative of a dysfunction of the central anti-nociceptive mechanism in CFS patients.

PMID:

15157711

[PubMed - indexed for MEDLINE]
 

Dolphin

Senior Member
Messages
17,567
Here's a study which compared lower back pain and CFS

J Rehabil Med. 2010 Oct;42(9):884-90. doi: 10.2340/16501977-0595.
Reduced pressure pain thresholds in response to exercise in chronic fatigue syndrome but not in chronic low back pain: an experimental study.
Meeus M1, Roussel NA, Truijen S, Nijs J.
Author information

Abstract
OBJECTIVE:
The aims of this study were to examine: (i) baseline pressure pain thresholds in patients with chronic fatigue syndrome and those with chronic low back pain compared with healthy subjects; (ii) the change in mean pain threshold in response to exercise; and (iii) associations withexercise-induced increase in nitric oxide.

PARTICIPANTS:
Twenty-six patients with chronic fatigue syndrome suffering of chronic pain, 21 patients with chronic low back pain and 31 healthy subjects.

METHODS:
Participants underwent a submaximal aerobic exercise protocol on a bicycle ergometer, preceded and followed by venous blood sampling (nitric oxide) and algometry (hand, arm, calf, low back).

RESULTS:
Patients with chronic fatigue syndrome presented overall lower pain thresholds compared with healthy subjects and patients with chronic low back pain (p < 0.05). No significant differences were found between healthy subjects and patients with chronic low back pain. After submaximal aerobic exercise, mean pain thresholds decreased in patients with chronic fatigue syndrome, and increased in the others (p < 0.01). At baseline, nitric oxide levels were significantly higher in the chronic low back pain group. After controlling for body mass index, no significant differences were seen between the groups at baseline or in response to exercise. Nitric oxide was not related to pain thresholds in either group.

CONCLUSION:
The results suggest hyperalgesia and abnormal central pain processing during submaximal aerobic exercise in chronic fatigue syndrome, but not in chronic low back pain. Nitric oxide appeared to be unrelated to pain processing.

PMID:

20878051

[PubMed - indexed for MEDLINE]
 
Messages
13,774
AfME chose to link to this paper on avoidance behaviour as part of their response to the PR for this new PACE paper.

Behav Res Ther. 2015 Jan;64:31-7. doi: 10.1016/j.brat.2014.11.003. Epub 2014 Nov 22.
Avoidance behavior in chronic pain research: A cold case revisited.
Volders S1, Boddez Y2, De Peuter S3, Meulders A4, Vlaeyen JW5.
Author information
Abstract

In chronic musculoskeletal pain, avoidance behavior is a prominent behavioral characteristic that can manifest itself in various ways. It is also considered a crucial component in the development and maintenance of chronic pain-related disability, supposedly fueled by pain-related fear and catastrophic beliefs. Despite the frequent occurrence of avoidance behavior and its potential impact on quality of life, relatively little research has been dedicated to the nature of avoidance in chronic pain and its assessment, leaving its underlying mechanisms poorly understood. In the current paper, we stipulate some of the existing parallels between chronic pain research and more basic fear and anxiety research inspired by modern learning theories. After a brief introduction, we discuss avoidance theories that are likely apt to be applied to chronic pain, including avoidance as a response that can affect fear responding, and the role of avoidant decision making and motivational context. Finally, we will outline how these theories may impact clinical treatment.

http://www.ncbi.nlm.nih.gov/pubmed/25506905

I've not read it yet.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Last edited:

Sasha

Fine, thank you
Messages
17,863
Location
UK
Dr. VanNess eloquently responds to the recent media storm, in a letter on the JustME blog.

I think it would be helpful to get this letter quoted elsewhere e.g. in response to the media articles.
Or better still, published in full in Lancet Psychiatry, or published in the letters section of a newspaper.

@charles shepherd has asked him to do so - to publish it on Lancet Psychiatry, that is. :thumbsup:
 

Daisymay

Senior Member
Messages
754
Here's Dr Willy Weir's comment on the recent PACE paper which he has submitted to the Lancet Psychiatry:


Rational understanding of the symptoms of ME/CFS.



The paradigm which states that the symptoms of ME have a psychological basis continues to be promoted (Lancet Psychiatry 2015: http://dx.doi.org/10.1016/S2215-0366(14)00069-8).Most recently “exercise phobia” has been proposed as part of the problem, although a study of which I was a co-author in 2005 explicitly disproved this proposition (J Psychosom Res 58 (2005): 367-373). This paradigm has no plausible scientific basis and can only be described as a doctrine whose adherents continue to ignore the biomedical evidence which amply confirms the organic basis of the condition. As someone with nearly 30 years’ experience of seeing patients with this severely disabling condition I continue to be dismayed by an irrational adherence by the psychological lobby to a doctrine that is not supported, even by their own studies, and which has been undermined by the published biomedical evidence.


The term “phobia” implies an irrational fear of exercise. The reason that ME sufferers avoid exercise is because they know from (sometimes bitter) experience that it makes them feel worse (often much worse) and results in post-exertional malaise (PEM). This is one of the cardinal features of the condition and can last for days, often for weeks and not uncommonly, for months. PEM is not imagined and causes a rational apprehension of exertion which should no longer be labelled as “phobia”. ME sufferers therefore avoid exercise for reasons which are entirely rational, and Dr Mark Van Ness’ recent work (now replicated elsewhere) has put much flesh on the bones of this argument.


As a simple analogy, a newly broken leg causes pain and most people so affected have an entirely rational fear of walking or even bearing weight on the affected limb. The pathophysiological basis of pain caused by a fracture is well understood, and now Dr Van Ness’ work has provided considerable insight into the pathophysiology of PEM. Not only do his findings give a clearer understanding of this devastating symptom of ME but they also effectively dispose of the argument that ME patients have “exercise phobia” or indeed that the disease is caused by patients wrongly believing they are physically ill.


Unfortunately, promotion of the doctrine that ME/CFS has a psychological basis continues to be disseminated by the inappropriately named “Science” Media Centre. They are not, in respect of ME, disseminating science at all, and continue to promote scientifically unsustainable and disproven theory, simultaneously ignoring proper scientific evidence. Sadly this is not an abstruse controversy, and patients whose genuine incapacity continues to be attributed to the psychological paradigm suffer enormously. I regard this as morally indefensible.



W.R.C.Weir FRCP, FRCP (Edin), Consultant Physician, 10 Harley Street, London W1G 9PF
 
Last edited:
Messages
3,263
Thanks to @Roy S, I've recently been reading James' Coyne's blog. These thoughts of his (loosely paraphrased from one of his presentations) on cancer echo our concerns about psychosocial research in ME.

I've bolded those statements which are most relevant to this thread.

Storyline in Cancer Care

Much of what we know about psychosocial aspects of cancer is mythical, even if the myths are widespread, contrary to fact, taken for granted as background assumptions, and resistant to evidence. The Myth is that:

Stress, personality, and emotion play substantial roles in incidence, progression, and outcome of cancer and psychosocial interventions can improve survival by strengthening the immune system.

This Storyline is highly consistent with entrenched cultural beliefs and fables about the triumph of human will over adversity and mind over body and its frailities.
  • Storylines often have the quality of a promissory note, giving favorable data more credence than is yet justified.
  • Storylines tend to exclude, minimize, or incorporate evidence with a confirmatory distortion.
  • Yet storylines are the basis by which evidence enters into clinical and public policy decisions and media depictions of issues.
Myths carry sentimentality, important emotional baggage that must be dealt with in any effort to counter the myth.

Sentimentality of this cancer storyline countered by articulation of concern that it hurts patients, not only by squandering resources, but by blaming patients for their morbidity and ultimate mortality.

We must not allow a shared commitment to improving the wellbeing of cancer patients to be exploited with exaggerated claims and poorly conceived, poorly conducted, and poorly reported clinical trials.
 
Messages
3,263
Actually, it gets even funnier and more releavvnt to PACE in Coyne's next section:

How to Succeed in Psycho-Oncology
  • Have Lots of Endpoints and Ignore Negative Results in Main Analyses of Primary Endpoints.
  • Favor Secondary Analyses, Subgroup Analyses, and Endpoints Developed Post Hoc Over Negative Findings for Primary Analyses.
  • Ignore Methodological Shortcomings That Would Make Trial or Meta Analyses Invalid.
  • Present Negative Findings as if Positive in Subsequent Publications and Exaggerate Findings That Are Positive
  • Assess Multiple Endpoints and Treat Any Significant Finding as if it were a Replication of Past Findings
  • Create a False Consensus and Seeming Unanimity in the Literature by Cherrypicking Findings That Can be Construed as Positive and Ignoring the Rest
A credible scientific journal should publish all studies with ‘‘null’’ results provided they acknowledge their limitations. Conversely, such a journal should be cautious about publishing ‘‘positive’’ results, most of which are false. Independent replication is important and should be done by different teams, preferably by competitors. ‘‘Null’’ results should be published promptly in print in short versions, with more extensive details in web-based files.