Health, Wellbeing and Prognosis of Australian Adolescents with(ME/CFS): A Case-Controlled Follow-up Study, 2021, Josev et al

Health, Wellbeing, and Prognosis of Australian Adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Case-Controlled Follow-Up Study

Abstract
Background: The purpose of this study was to follow-up an Australian cohort of adolescents newly-diagnosed with ME/CFS at a tertiary paediatric ME/CFS clinic and healthy controls over a mean period of two years (range 1–5 years) from diagnosis.

Objectives were to
(a) examine changes over time in health and psychological wellbeing,
(b) track ME/CFS symptomatology and fulfillment of paediatric ME/CFS diagnostic criteria over time, and
(c) determine baseline predictors of ME/CFS criteria fulfilment at follow-up.

Methods: 34 participants aged 13–18 years (25 ME/CFS, 23 controls) completed standardised questionnaires at diagnosis (baseline) and follow-up assessing fatigue, sleep quality and hygiene, pain, anxiety, depression, and health-related quality of life. ME/CFS symptomatology and diagnostic criteria fulfilment was also recorded.

Results: ME/CFS patients showed significant improvement in most health and psychological wellbeing domains over time, compared with controls who remained relatively stable. However, fatigue, pain, and health-related quality of life remained significantly poorer amongst ME/CFS patients compared with controls at follow-up. Sixty-five percent of ME/CFS patients at baseline continued to fulfil ME/CFS diagnostic criteria at follow-up, with pain the most frequently experienced symptom. Eighty-two percent of patients at follow-up self-reported that they still had ME/CFS, with 79% of these patients fulfilling criteria. No significant baseline predictors of ME/CFS criteria fulfilment at follow-up were observed, although pain experienced at baseline was significantly associated with criteria fulfilment at follow-up (R = 0.6, p = 0.02).

Conclusions: The majority of Australian adolescents with ME/CFS continue to fulfil diagnostic criteria at follow-up, with fatigue, pain, and health-related quality of life representing domains particularly relevant to perpetuation of ME/CFS symptoms in the early years following diagnosis. This has direct clinical impact for treating clinicians in providing a more realistic prognosis and highlighting the need for intervention with young people with ME/CFS at the initial diagnosis and start of treatment. View Full-Text

https://www.mdpi.com/2077-0383/10/16/3603

 

They used the Canadian Consensus Criteria.

This is what they said at the end:

"Given the observed persistence of ME/CFS symptoms, poorer health and reduced psychological well-being at follow-up compared with healthy controls (i.e., fatigue, pain, and health-related quality of life problems), the current study highlights the need for early identification and targeted and intensive treatment in these domains that continues at least two years post-diagnosis, but ideally longer.

The symptom domain of pain may be a particularly pertinent area of focus in the management of paediatric ME/CFS, given pain was most frequently endorsed at follow-up, and pain at baseline was significantly associated with fulfilment of ME/CFS criteria at follow-up. Clinical multidisciplinary strategies targeting pain relief and management including medication, physiotherapy, cognitive and behavioural techniques (i.e., meditation, mindfulness and acceptance and commitment therapy), and regular follow-up with the treating physician will be essential in this regard."​

 

I see it as a positive that some 35% appear to be ‘recovered’, though this is much less than the general medical opinion of most children recovering, but how on Earth can they conclude from the fact that current service provision has failed to cure 65% that what is needed is yet more of the same?

These figures could be equally interpreted to indicate that current service provision is just plain wrong, and the third that ‘recovered’ did so despite current intervention rather than because of it.

 

Strange that none of the variables measured (fatigue, sleep quality, pain, depression and anxiety, quality of life) predicted having ME/CFS at follow-up.

 

The abstract writes:

"34 participants aged 13–18 years (25 ME/CFS, 23 controls)"
​

Which is probably an error. 48 patients were invited to participate but 10 could not be contacted and 4 withdrew which gives 34 participants (17 with ME/CFS and 17 healthy controls).

 

From what I've heard, all of the hospital-based ME/CFS clinics in Australia are terrible. If I had a child with ME/CFS, I wouldn't let them anywhere near them.

 

There is obviously a self-selection process at play here, with those who deteriorated obviously unable to participate in such studies. And I doubt most of the patients would find the improvements to be significant. The overall trend is probably roughly that most slightly improve over time but this is missing out entirely on the worse off, the trend may even be a simple reflection that people simply adapt and lower their expectations anyway.

How does junk like that get published?

Says who? Based on what? This is not a serious statement to make in medical literature. And given the mediocrity of pain management, this is definitely not something people should pin any hopes on, we know it's terrible all-around, medicine seriously has huge problems detaching the romantic ideal-case version they have of medicine and what it is actually capable of.

This is slightly better than usual but frankly still falls very short of minimal acceptable quality.

 

I wonder how many of these trials will be needed going forward? One hundred? Two thousand?

Given that we know some people remain ill and CBT/GET have been debunked I wish gov't and other funding bodies would put money aside to research aetiology and cure or at least a treatment that actually benefits PwME enough to get back to their lives.

This may be a reasonable study. I think generally though that all fall short in some way. When these studies are so cheap by comparison why not do a thorough job of it?

I confess that even if we come across papers that are sound methodologically (although usually not) and tell us something there is a limit to my ability to read about this rather than that money was given to confirm a biological finding using a correct cohort or some other biological lead that could use some scrutiny.

A bit ill tempered of me I know. But this is how I feel every time now I see a new study going over the same ground covered ever so many times before. Even when it's different this time.

* I also seem to have lost the ability to add since there were 34 participants (25 ME / 23 controls) So a cure would really help me sort that problem.

 

If they asked people with ME they would discover that many of us have almost constant pain but it is not chronic pain but a deep burning ache that feels like a build up of lactic acid when you have done too much exercise. Basically the activities of daily life make us feel as if we have just played football for the first time in twenty years or dug up the garden.

No amount of meditation is going to cure that

 

An important point, in that this study purports to be descriptive of the experience of children with ME in the context of a specific service, but does not first seek to develop meaningful measures of ME, rather it primarily relies on rating scales reflecting an ideological understanding of the condition based on a BPS approach (ie in reality a psychological approach) potentially ignoring key symptoms and then draws conclusions about appropriateness of specific treatment approaches, which the study is not designed to evaluate and which their results suggests are of at best very limited effectiveness.

[added - This is not to say that this study is totally without interest, but that we desperately need quantifiable descriptors that reflect current understandings/definitions of the condition before we can address issues like incidence, disease profile, prognosis and treatment outcomes.]

 

Overall this suggests that the often-quoted/suggested high recovery rate in children must be in the first year or so, before they are referred to tertiary care.

 

What "intensive treatment", there is none at all. Unless you count the potentially harmful GET and CBT. I find it puzzling, the things that some call treatments.

 

this veers on blaming patients for not getting better

Edit to add: let’s change ME/cfs for MS and see how that rings…

I don’t think so.

 

Not any coffee in the house this morning
I can't make sense of this
Sixty-five percent of ME/CFS patients at baseline continued to fulfil ME/CFS diagnostic criteria at follow-up, with pain the most frequently experienced symptom. Eighty-two percent of patients at follow-up self-reported that they still had ME/CFS, with 79% of these patients fulfilling criteria.

65 % of one group ( 11)
79% overall ( 27) fulfilling criteria - does this represent the development over time?
Not an insignificant effect.