Neurocognitive improvements after best-practice intervention for chronic fatigue syndrome (Cvejic)

[A.B.]

The authors acknowledge that their patient sample were less severely affected.

Notably, the current sample was representative of those attending tertiary referral clinics, and was closely comparable to samples previously obtained from the same clinic [5,19]. However, this patient cohort tends to fall towards the lower end of the severity spectrum, and may be substantively different from those too impaired to attend such an intervention (i.e., patients with CFS that are bedridden)

The clinic in question appears to be UNSW Lifestyle Clinic.

 

[Hutan]

It's by Andrew Lloyd. Say no more.

Good spotting.

The Dubbo studies done by Andrew Lloyd that followed people with several kinds of infections known to sometimes lead on to post-viral fatigue were so well thought through and executed.

So I was really surprised at Lloyd's later article in the British Medical Journal (I think) and his statements in a video that seemed to dismiss any findings of a medical cause and promote Wessley et al views. And now he produces this shoddy study.

It makes me think that Lloyd must have had one or two very bright students or associates helping him with the Dubbo studies.

 

[barbc56]

Only 12 weeks before repeating the same tests?

That's one of the big flaws with these interventions. Over time the effects dimish. Any psychologist /psychiatrist /psych researcher should know this. It's a basic fact that can have huge impacts on results.

There is also an issue of short term neurocognitive performance after rest versus after exertion and delayed problems after exertion

This would make for an informative study.I'm not aware of any but that doesn't mean they don't exist.

no clue

That's on them and not on you nor the rest of us scratching our heads trying to decipher all this!

Maybe people that are sleepy after they work a full days work, take care of there kids and Participate in a normal life

Believe me, as a parent working and raising kids, it's exhausting. This was before I got sick and it doesn't even come close to what I'm experiencing now. I don't know how people who are trying to raise kids with this illness do it. Unless you can afford a house cleaner, cook, personal assistant, nurse, etc. etc.. How realistic is that?

9 of the 25 patients were on antidepressants, and had been for a while

Another head scratcher.

 

[panckage]

Some patients doing up to 15 hours of moderate intensity exercise per week (3.8 hours on average) is also suspicious in a disease defined by a pathological intolerance of exertion.

I guess this means walking? I really wish people would read the criteria for a disease before making a judgement like this. Nowhere in the CCC (or in any modern cfs diagnostic criteria) would that disqualify someone from having cfs. Please no more of these red herring arguments

You are welcome to prove me wrong by citing criteria that uses the above to disqualify someone from having cfs though

 

[barbc56]

I guess this means walking? I really wish people would read the criteria for a disease before making a judgement like this. Nowhere in the CCC (or in any modern cfs diagnostic criteria) would that disqualify someone from having cfs. Please no more of these red herring arguments

You are welcome to prove me wrong by citing criteria that uses the above to disqualify someone from having cfs though

So PEM's not in the CCC criteria or are you talking about somerhing else and in my confusion, reading this incorrectly.

 

[Snowdrop]

From the Canadian Consensus Criteria (pg 4): See PDF here: https://fm-cfs.ca/support/patients/cfsguidelines/ME-Overview-1.pdf

Quote: Physical or mental exertion often causes debilitating malaise and/or fatigue. . . patients experience rapid muscle fatigue and lack of endurance.. .recovery time is inordinately long . . .exercise may trigger a relapse.

Edited to add: International Consensus Criteria: See: http://solvecfs.org/international-consensus-criteria-published-for-myalgic-encephalomyelitis/

Diagnosis begins with assessment of post-exertional neuroimmune exhaustion (PENE), rather than fatigue. “Post-exertional neuroimmune exhaustion is part of the body’s global protection response and is associated with dysfunction in the regulatory balance within and between the nervous, immune and endocrine systems, and cellular metabolism and ion transport. The normal activity/rest cycle, which involves performing an activity, becoming fatigued, and taking a rest whereby energy is restored, becomes dysfunctional.”

 

[alex3619]

Its possible for someone to be able to exercise a lot and still have ME or CFS. Possible but uncommon. Athletes or very fit people who get ME will have to lose more than 50% of their capacity but that might still leave them much more capable than the average person. Its not the existence of people able to do moderate exercise that is the issue, but how many. Its uncommon. It points to poor cohort selection. This could however not be just due to poor patient screening, but due to some kind of a selection bias. What if more fit or athletic people who get sick go to the clinics that were recruited from? The cohort would then be subject to bias.

There are too many qualitative and poorly defined words here. What do they mean by moderate exercise?

I used to be able to walk for three hours per week when I was much less severe than now. That was not exercise, it was just getting things done in real life. This did sometimes exceed my capacity though. It was also broken up a lot ... nothing like continuous. A fifteen hour capacity signals an outlier. It is entirely appropriate to ask why, or to ask questions about the cohort.

 

[panckage]

So PEM's not in the CCC criteria or are you talking about somerhing else and in my confusion, reading this incorrectly.

PEM is in the criteria. When CFS is mild it is harder to trigger. Milder PWME can do many normal activities if they are careful and pace themselves

 

[Valentijn]

I guess this means walking? I really wish people would read the criteria for a disease before making a judgement like this. Nowhere in the CCC (or in any modern cfs diagnostic criteria) would that disqualify someone from having cfs. Please no more of these red herring arguments

If ME symptoms are so mild as to essentially not be present, they make for poor research subjects. That doesn't stop them from being diagnosed and treated appropriately, which is still not going to happen at the researcher's clinic.

And they didn't use CCC. They used Fukuda, where PEM is not mandatory. It is unlikely that they seriously defied the odds and got a bunch of extremely mild and/or athletic patients who can remain very physically active despite having a "substantial reduction" in activity levels. It's much more likely that people who view CFS as a psych disease misdiagnose their fatigued psych patients.

At any rate, the data indicates that this is a very loosely defined cohort. They absolutely do not represent CCC or ICC or SEID patients with PEM. And the demographic information suggests that an ME/CFS diagnosis is questionable in many of the cases.