Paediatric patients with [ME/CFS] value understanding and help to move on with their lives, 2019, Katherine Rowe

Andy

Andy

Retired committee member
Aim

The aim of this study was to document qualitative questionnaire feedback regarding management from a cohort observational study of young people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Methods
Between 1991 and 2009, 784 paediatric patients, age 6‐18 years, were diagnosed with ME/CFS following referral to a specialised clinic at the Royal Children's Hospital, Melbourne. Over a 14‐year period, feedback was requested on up to seven occasions.

Management included the following: symptom management and a self‐management lifestyle plan that included social, educational, physical and a pleasurable activity outside of home. They adjusted it by severity of illness, stage of education, family circumstances and life interests.

Results
Questionnaires were returned from 626 (80%) with 44% providing feedback more than once. They reported that their management plan allowed them to regain control over their lives. They cited early diagnosis, empathetic, informed physicians, self‐management strategies and educational liaison as helping them to function and remain socially engaged. Ongoing support, particularly assistance to navigate the education system, was essential for general well‐being and ability to cope.

Conclusion
Young people valued regaining the control over their lives that was lost through illness, support to maintain social contacts and assistance to achieve educational and/or life goals.
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Open access, https://onlinelibrary.wiley.com/doi/full/10.1111/apa.15054
 
The TL;DR appears to be: supporting sick people with competent professional health services is beneficial to their outcomes. * If early. * If competent. * In children

And you don't need to do a lot to make a difference. Just don't be a jerk for a start. And don't gaslight. Then pay attention and build from reality, not aspirations. Which says a lot about the BPS model, when literally any meaningful help would make a difference and it is still rejected as useless. The bar is as low as it gets and it still misses it. Like starving people rejecting your "food", because it isn't actual food.

Which is as expected. If this experience were the norm outcomes would be massively improved, this is pretty self-evidence. Unfortunately this experience is the rare exception and there is immense resistance to changing that, the very idea is rejected as a pointless waste of time.

Not sure what that tells us. Competent physician education based on the actual illness itself is what advocates have been begging for decades, along with research that will build a reliable knowledge base. So how do we get that to happen?
 
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Opinion piece based on the study that is the topic of this thread. Also mentions the editorial reference above.
Twenty years ago the Archivist sat in a clinic for children and young adults with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) with Dr Kathy Rowe. This clinic has been running for well over 30 years. When this clinic started, there was many an eminent educationalist or healthcare clinician who would argue that this diagnosis didn’t exist. It was refreshing to see the results of a long term follow-up study assessing the value of these clinics and the patients cared for within the clinic. Rowe K [Acta Paediatrica 2020;109:790–800. DOI: 10.1111/apa.15054] reports a prospective cohort study of 784 young people with ME/ CFS.
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Paywall, https://adc.bmj.com/content/105/5/451.full
Sci hub, https://sci-hub.tw/10.1136/archdischild-2020-319237
 
edit: commenting on the 'Archivist' piece in what had been another thread.

There was no control group, so how much evidence was there that these children were helped to get control back over their lives?

It’s a simple message: early diagnosis, empathetic informed physicians, assistance with symptom control, self‐management strategies, educational liaison and advocacy enabled them to regain control, remain socially engaged and function optimally. The Archivist has managed many of patients with similar symptoms over the years and these results are obvious. However, so many children and young adults have their progress denied due to non empathetic physicians, not recognising their illness and engaging with futile investigations and re referrals to other specialists rather than recognising the diagnosis and focusing on with simple management strategies of symptoms control and managing their lives so they can function again.
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Yuck.

Wonder who this archivist is?

Given the way this journal promoted the Lightning Process and downplayed the problems with SMILE it's interesting that they try to create the impression of being concerned by the way patients are treated. Sometimes those who like to talk about 'empathy' do so in a way that helps disempowers patients by assuming that they can so empathise with the way patients want to be manipulated and managed by authority figures to help deal with what is a very real illness.
 
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(Not a recommendation.) Swedish BPS blogger Jörgen Malmquist recently blogged about the study, and added some extra comments yesterday:
Google Translate said:
As expected, I have received many comments on Twitter (probably also in other places unknown to me). Almost all writers express themselves negatively, most of them by passively copying someone else's text.

It is constantly emphasized in the comments that there were many who did not become completely healthy. I wrote (see above) that half (50%) of them recovered but that 5% had remained seriously ill. Thus, it is clear that a large proportion had residual symptoms of varying degrees. Attempts to criticize my text are thus meaningless. [...]

Within the ME community, there is a clear aversion to all information that indicates the possibility of recovery. They are very protective about the prognosis being poor. As far as I know, this attitude is unique among communities around a certain diagnosis. Unfortunately, this propagated pessimism cannot fail to raise negative expectations among ME patients who instead need hopeful information.

The comments currently being spread by ME community activists have an unpleasant spirit of suspicion. It is claimed that the recovered spread false lies about their state of health and activity. The sources of information on which ME activists are based are not stated. Are you spying on the recovered? Or is it gossip?
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https://web.archive.org/web/2021042.../04/19/me-cfs-unga-personer-som-tillfrisknar/

I think maybe someone has expressed doubts about his knowledge about ME, because he tweeted this the other day:
Google translate said:
About my qualifications: I have not researched ME and have not met anyone who has or has had ME. I have been a doctoral hospital doctor and have been working for years to study medical information and present it to professionals and the general public. That goes a long way. @svmecfs
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Sten Helmfrid has commented on Twitter:
Google Translate said:
It is disheartening that you sweepingly condemn the criticism as disheartening without actually responding to the objections that have been raised.

It is also disheartening that you without evidence suggest that people can get well simply through hope. Does this apply to all diseases or is it specifically patients with ME/CFS who can recover by having their prognosis dressed up?



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I wrote (see above) that half (50%) of them recovered but that 5% had remained seriously ill. Thus, it is clear that a large proportion had residual symptoms of varying degrees. Attempts to criticize my text are thus meaningless. [...]
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Let's check his whining more closely.

When BPS believers talk about recovery there are a few things to consider. Recovery usually means back to health from before illness but that definition is unlikely to be the one meant. I'm sure there are others who can elaborate better than I can on that. So even if we presume full recovery is meant how can HE know it is so if there is no follow-up -- and there never is long-term. I think here statistically the term is regressing to the mean?

How about people who dropped out? Are they followed up as to why they left? We've seen papers with small co-horts and rather relatively large drop out rates. No curiousity as to why because they don't want to know.

And as we all know it's not just a matter of 'do some recover' but also were some harmed? And we know from endlessly checking and asking that the cabal do not believe in harms therefore they do not exist and do not need to be noted.

But the cabal of believers like to keep it simple.

So all of the negative commentary is bad, so bad and mean. Can't we understand --- SOME RECOVER!!!!.

Well maybe, but we can't know for sure if you don't look too carefully (lax recovery definitions, drop outs, noting harm) or expect some kind of commitment to truly finding out (long-term follow-up [as in truly long term]).

But at the end of the day I expect we are talking right past each other since we don't know that any particular BPS person is even referring to people with ME. All they ever see is fatigue.
 
mango said:
(Not a recommendation.) Swedish BPS blogger Jörgen Malmquist recently blogged about the study, and added some extra comments yesterday:

https://web.archive.org/web/2021042.../04/19/me-cfs-unga-personer-som-tillfrisknar/

I think maybe someone has expressed doubts about his knowledge about ME, because he tweeted this the other day:

Sten Helmfrid has commented on Twitter:
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50 % recovered- is this a new estimate ?
Not the rule of thirds
Not the paediatric 80 %

Goalposts moving again ?
 
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