You and ME: An Update on Myalgic Encephalomyelitis for Psychologists by Rose Silvester

[Indigophoton]

Superb article for psychologists originally published in the June 2018 edition of the Journal of the New Zealand College of Clinical Psychologists (NZCCP). In the course of her research, the author spoke to @Carolyn Wilshire.

Rose Silvester is a consultant clinical psychologist based in Wellington, New Zealand, currently working at the Regional Personality Disorder Service at Capital & Coast District Health Board (CCDHB). In the context of her son’s illness she has immersed herself in the literature available on ME/CFS and models of care for chronic illness. She is engaged with the global ME/CFS community of researchers, clinicians and advocates and has initiated a national carers support network (NZ carers of kids with ME/CFS and related illness - NZcare4ME) as well as a local carers support group.

My son lives behind the closed door of a dark room. He has been there for two and a half years, he is 17, he has myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I cannot unlock the door.
Unlike most other people who have this problem, his onset was not abrupt and not obviously triggered by an assault to the immune system, such as by one of the many associated viruses, or by vaccination, or any event that created significant stress for the body. Toward the end of his primary years, I found myself frequently making excuses for him, for why he was very bright but struggled to be on task, why he went from being in the top 10 in the school cross country to being hundreds of metres behind the last kid, why at soccer following the half time sugar hit that revved the other kids up, he was listless and just watched as the ball rolled past. I blamed it on the insomnia, night sweats, and headaches because they were certainly there, and I thought to myself “kids are weird—they grow out of it.”

 

[Trish]

I agree it's a superb article. The link you give is to a Facebook page. Is there any way to access the article in the Journal, I wonder?

 

[Sly Saint]

I agree it's a superb article. The link you give is to a Facebook page. Is there any way to access the article in the Journal, I wonder?

this is the website for the journal, but I can't find any mention of this article
https://www.nzccp.co.nz/membership/publications-and-resources/published-journal-articles/

 

[Webdog]

I read it on Facebook. Sign in was not required.

 

[Sly Saint]

I agree excellent article.

key phrases for me (relevant to the NICE stuff)

"He denied that he was tired or fatigued. Nothing. His batteries were just flat."

"We eventually achieved this diagnosis, but too late to be aware of the cumulatively damaging effects of the episodes of unwellness that we now know were “crashes.”"

"Post-exertional malaise is a hallmark symptom. It simply means that the window for tolerating any exertion, be it physical, cognitive, or emotional has narrowed. A marked worsening of symptoms occurs in the 12–72 hours following exertion. This worsening, sometimes called a crash, can persist for days, weeks, months, or years. Inter-episode recovery decreases with each crash.

"For around 25% of people, the window narrows to a point whereby activities of independent living are not possible. They are confined to their houses. Many are bed bound."

 

[Little Bluestem]

It's a shame that it takes some psychologist's child getting this disorder for them to get a clue. Assuming they do get a clue and don't accuse the mother of enabling or whatever.

 

[Sean]

Good article.