School Nurses Can Improve the Lives of Students With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2018, Friedman et al

Andy

Retired committee member
Does this count as "good" psychosocial research, as in, in terms of where to put it on the forum?
Abstract
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic illness that is defined and diagnosed by its symptoms: extreme fatigue made worse by physical and mental activity, pain and decreased mental stamina, among others. A long-held, erroneous belief that ME/CFS is not a physiological illness has persisted among some clinicians, leading to the denial of a patient’s physical illness and attributing the symptoms to other causes.

The debilitating effects of ME/CFS in the pediatric population can affect all aspects of academic, social, emotional, and physical development. ME/CFS has been diagnosed in children younger than 10 years. Therefore, the school nurse is likely to encounter one or more students in the various stages of this disease, putting the school nurse in a position to ameliorate the impact of this potentially devastating chronic condition.
Paywalled at http://journals.sagepub.com/doi/abs/10.1177/1942602X18795299?journalCode=nasb
 
Good question!

I thought there was relevant and useful info here. Nice to see Unrest mentioned as source of information.
I'm sceptical on how they present correct management of ME as a road to recovery. It might lead to improvement, but it's not given, so might create expectations the patients have no chance to fulfil.
 
Does this count as "good" psychosocial research, as in, in terms of where to put it on the forum?
Given the following slant of this paper, I would say 'good'. Not read it all, so may be some glitches, but nothing is perfect.
For years, studies have been published demonstrating the psychological or psychosomatic causation of ME/CFS (Penfold et al.). More recently, the data analyses used in these studies have been questioned calling for the withdrawal of these papers (Rehmeyer & Tuller, 2017; Wilshire et al., 2018). Further challenging the psychological or psychosomatic causation of ME/CFS are recent studies using more sophisticated laboratory research techniques demonstrating unique abnormalities associated with ME/CFS at the gene and gene-expression levels (de Vega, Herrera, Vernon, & McGowan, 2017; Tomas & Newton, 2018). Despite these more recent research findings, the long-tenured, false belief that ME/CFS is an illness without an identifiable physiological abnormality persists, leading to the stigmatization of this illness as a psychological illness and causing delay in a correct diagnosis (Institute of Medicine, 2015). The school nurse, knowledgeable about the stigma, the clinical research, and the life-saving advantages of instituting early and appropriate care for young people with ME/CFS, may need to educate others who are unfamiliar with the disease or who are reluctant to accept ME/CFS as a valid, physiological illness within his or her workplace.
[my bold]

ETA: The PACE author's etc would correctly argue they never dispute there is a physiological problem (i.e. deconditioning), the but the above is still correct in that Sharpe et al falsely believe there is no physiological condition that cannot be fixed by their proposed behavioural changes.
 
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I feel the paper tries to do several things - talk about nurses helping direct one to an early diagnosis and longer term support.
But to me it feels vague overall and the text seems sparse re onset of cognitive issues as an indicator of ME.

(I have quibbles with language usage in the paper. For instance,

upload_2018-10-1_9-45-19.png
Which definition says ME can be dx'ed if it only lasted 4 months?
upload_2018-10-1_9-45-32.png
I might have used something like "asserting" rather than "demonstrating"....)
 
I feel the paper tries to do several things - talk about nurses helping direct one to an early diagnosis and longer term support.
But to me it feels vague overall and the text seems sparse re onset of cognitive issues as an indicator of ME.

(I have quibbles with language usage in the paper. For instance,

Which definition says ME can be dx'ed if it only lasted 4 months?
I might have used something like "asserting" rather than "demonstrating"....)
NICE suggests four months, I believe. I think this is an attempt to see speedier diagnosis.
 
NICE suggests four months, I believe. I think this is an attempt to see speedier diagnosis.

I am in favor of managing symptoms as soon as they are seen, but not sure about dx'ing at 4 months (or 3 as mentioned in the podcast). The dx criteria in the article don't seem to follow the ped. primer, the IOM report or the CCC which I find confusing.
(Another grumble from me-Both the podcast and article get prevalence from Crawley's study which isn't about ME.... Inflating prevalence is just as bad as underestimating it.)
 
NICE suggests four months, I believe. I think this is an attempt to see speedier diagnosis.

For children/adolescents Dx can be 3-4 months, I think. However getting to see someone who is able to Dx you in that timescale is pretty difficult, unless you pay to go privately, in UK.
 
[quote from the paper:
By definition, it lasts minimally 4 to 6 months, and, if not managed properly, becomes a chronic illness with lifetime disabilities which makes accomplishing the tasks of daily living difficult or impossible

This sentence is a bit misleading in my view. It seems to assume that if you manage it properly from the get go, that you may avoid a lifetime of chronic illness and disability. I disagree with this. i think we can all agree that pushing exercise and continuation of normal activities is harmful and may carry long term or permanent consequences. But if you practice pacing and work on sleep, healthy gut and the rest, it does not mean you are back to healthy. We know in fact that patients usually do not recover, though the odds are better in a pediatric population.

In case people don’t know, Dr Ken Friedman is a long time advocate , father of a ME patient and retired physician and from teaching in a med school in New Jersey. Donna Pearson was a member of the now deceased CFSAC working in education I believe.
 
For children/adolescents Dx can be 3-4 months, I think. However getting to see someone who is able to Dx you in that timescale is pretty difficult, unless you pay to go privately, in UK.
It's four months for an adult, and three for a child: https://www.nice.org.uk/guidance/cg53/chapter/1-Guidance#diagnosis

I believe they reduced this from the six months in the Oxford criteria because patient groups and clinicians advised we needed to speed up diagnosis.
 
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