Open Interpersonal relationships, stress and symptoms in Chronic Fatigue Syndrome (CFS/ME)

deleted --- multiple swear words (mine) ----- deleted

Interpersonal relationships, stress and symptoms in CFS/ME - Health Research Authority (hra.nhs.uk)

"Interpersonal relationships, stress and symptoms in CFS/ME

Research summary

Chronic Fatigue Syndrome (also known as myalgic encephalomyelitis; CFS/ME) is a contested disorder that produces a range of symptoms, such as persistent, severe fatigue (Baker & Shaw, 2007). People with CFS (PwCFS) face stressful events daily, e.g., attending doctors’ appointments and negative interactions with family/healthcare professionals. These challenges can put stress on a romantic relationship. Research has shown the way partners interact can influence illness outcomes for PwCFS (Band et al., 2015). PwCFS may feel they are disbelieved, or the legitimacy of their illness is being questioned (Dickson et al., 2007). This is likely to be stressful for PwCFS. This research suggests significant others play an important role in the experience of CFS for PwCFS.

Due to the likeliness of stress being a regular experience for PwCFS, it is important to explore what aspects of a romantic relationship provoke a stress response/ make the PwCFS feel stressed. The research question is ‘How does interpersonal communication in couples influence stress reactivity and symptoms in people with Chronic Fatigue Syndrome (CFS/ME)?’. The study will use a marital interaction discussion paradigm to explore whether certain communication behaviours are related to stress reactivity (biological and psychological) and symptoms in PwCFS. Participants (dyads made up of PwCFS and their partner) will take part in a marital interaction task on Zoom, and be recruited through NHS sites. This study is longitudinal with a 3 month follow up of CFS symptoms.

This question is of importance, as through exploring the interactions between communication behaviours, stress reactivity, and symptoms, we will gain insight to better support PwCFS and partners with managing CFS. Individualised support can also be given to partners of PwCFS. This study can help PwCFS and their partners to understand the impact their relationship has on symptoms, and has implications for health professionals and family therapists.

References
Baker, R., & Shaw, E. J. (2007). Guidelines: Diagnosis and management of chronic fatigue syndrome or myalgic encephalomyelitis (or encephalopathy): Summary of NICE guidance. In British Medical Journal. https://doi.org/10.1136/bmj.39302.509005.AE
Band, R., Wearden, A., & Barrowclough, C. (2015). Patient outcomes in association with significant other responses to chronic fatigue syndrome: A systematic review of the literature. Clinical Psychology: Science and Practice. https://doi.org/10.1111/cpsp.12093
Dickson, A., Knussen, C., & Flowers, P. (2007). Stigma and the delegitimation experience: An interpretative phenomenological analysis of people living with chronic fatigue syndrome. Psychology and Health, 22(7), 851-867."

This joker is using the 2007 NICE Guideline !!!!
 
Sid said:
Simple heuristic but works almost 100% of the time: if they call it CFS/ME you know it’s quackery.
Click to expand...
Add any format of "psychosocial" (e.g. biosocial, sociobio, psychosocio, mumbojumbo), "mind-body" and "holistic" and you can basically exclude 99% of all the pseudoscience while not missing anything of value. It works very well and will probably hold true for the next half-century.

Edit: forgot "mind-body", how could I forget?
 
Last edited:
"...influence illness outcomes...

Comments like this seem to imply that ME ahem...."cfs" is short-lived. Not so, from experts' studies, and many with lived experience.

Reducing stress, yeah that's good. But, it won't cure ME. Or, "cfs".
 


“‘There have been one or two times where I have been worried because they have got angry at the patients...that anger has been communicated to the patients. Their frustration has reached the point where they sort of boiled over... there is sort of feeling that the patient should be grateful and follow your advice, and in actual fact, what happens is the patient is quite resistant and there is this thing like you know, "The bastards don't want to get better"...I think it's a difficult thing for all therapists and I think basically over the time you just basically learn to cope with it, and but they have not had time.' (Supervisor)”
 
cassava7 said:


“‘There have been one or two times where I have been worried because they have got angry at the patients...that anger has been communicated to the patients. Their frustration has reached the point where they sort of boiled over... there is sort of feeling that the patient should be grateful and follow your advice, and in actual fact, what happens is the patient is quite resistant and there is this thing like you know, "The bastards don't want to get better"...I think it's a difficult thing for all therapists and I think basically over the time you just basically learn to cope with it, and but they have not had time.' (Supervisor)”
Click to expand...



I have a recollection that this, and the correspondence, was bad:
Doctors and social epidemics: the problem of persistent unexplained physical symptoms, including chronic fatigue.
Ian Stanley, Peter Salmon, and Sarah Peters
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1314288/
&
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1314419/pdf/12236282.pdf

e.g.
It should not be forgotten that adherents to a reductionist scientific approach, lobbyists for a variety of therapies, and ME pressure groups have a vested interest in perpetuating all, or a sub-set of, PUPS as disease rather than a socially determined phenomenon
Click to expand...
 
Last edited:
cassava7 said:


“‘There have been one or two times where I have been worried because they have got angry at the patients...that anger has been communicated to the patients. Their frustration has reached the point where they sort of boiled over... there is sort of feeling that the patient should be grateful and follow your advice, and in actual fact, what happens is the patient is quite resistant and there is this thing like you know, "The bastards don't want to get better"...I think it's a difficult thing for all therapists and I think basically over the time you just basically learn to cope with it, and but they have not had time.' (Supervisor)”
Click to expand...



This is all so poisonous. Evidence the BPS paradigm caused abuse then. As well as harm instead of 'help'. Basically these therapists were asked to programme a certain 'attitude' into nurses - and this is it? Institutionalised wedge-driving, in case the 'exercise avoidance' and 'false belief' accusations in the guidelines didn't do the trick already.

And yes the cortisol stuff is the dodgiest methodology around I've seen. Are they counting on pretending it isn't the hormone that keeps each and every person on this earth alive, and rises with exertion - so will with over-exertion in a condition whose cardinal feature is in response to over-exertion and then pretending it is psychological only? Because I see nothing about how they account for this, just some strange assumption they are measuring stress a few times a day and taking a questionnaire or interview.


What does need to be done is how many daily harms and abuses are done in domestic situations as a direct consequence of the misinformation directed by the BPS paradigm. How many times is someone pushed into harmful PEM due to a spouse having been told it won't hurt them. How many arguments are caused by the spouse being told the reverse of why their partner is getting more ill (and from above the researcher themselves proved this is also the messaging it creates)?

How many mistreatments happen because, as above, the spouse has been told to blame the person made ill by such bad advice? Or to treat them as an 'unreliable witness' or 'resistant'? And how exacerbated were these by 'professionals' encouraging that was the right thing to do, and having that level of disdain and siding with such labels and horrible ideas?

Why cortisol now all of a sudden instead of basic common sense - if you aren't going to measure actual exertion? We all know what isn't good for people or is cruel or unkind. The above shows exactly what the BPS messaging caused in nurses. Is this going to be another 'research' set up to deliberately muddle 'cause' and 'consequences' ? Just when they need to be taking responsibility for their last few decades?
 
Dolphin said:
I have a recollection that this, and the correspondence, was bad:
Doctors and social epidemics: the problem of persistent unexplained physical symptoms, including chronic fatigue.
Ian Stanley, Peter Salmon, and Sarah Peters
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1314288/
&
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1314419/pdf/12236282.pdf

e.g.
Click to expand...

I just had a look at their reply to correspondence.

I'm not sure Fitzpatrick has the best understanding of why there is controversy here - but then, I think that we should be examining the moral grounds of approaches to ME/CFS so these authors might be unhappy with me about that.

For a
better understanding of why the work-
ings of the CMO’s group were contro-
versial, we refer Dr Goudsmit to the
article by Michael Fitzpatrick 4 in the
same edition of the BJGP as our edito-
rial.
Click to expand...

It should not be forgotten that adher-
ents to a reductionist scientific
approach, lobbyists for a variety of
therapies, and ME pressure groups
have a vested interest in perpetuating
all, or a sub-set of, PUPS as disease
rather than a socially determined phe-
nomenon. Readers of the BJGP may
draw their own conclusions about the
difficulty of rational debate on this sub-
ject from the vehemence with which
our views have been dismissed, from
the eagerness to label us as ‘unscien-
tific’ and from the ways in which our
argument is distorted into one that can
be attacked on moral rather than sci-
entific grounds, as being malign or
unfair.
Click to expand...
 
You must log in or register to reply here.
Back
Top Bottom