PEM is associated with greater symptom burden and psychological distress in patients ... with CFS (2019) May, Fletcher, Klimas et al.

People more upset caused by symptom increases. Logical. Would these authors say that those with worsening stages of any disease should just laugh it off; don't be distressed?

 

Don't you just love the research of the obvious and more confirmatory research of the same?

Ditto the symptom of depression when one of us is having a severe crash, or catastrophizing more. Duh. Enough already.

 

I have concluded that these kinds of studies increase distress and distrust because they spread misinformation. This could be avoided if the authors spent more time with patients and were willing to question some transmitted wisdom. Some psychiatrists from the UK have used the excuse of mental health to avoid genuinely listening to patients and as result, we patients have become allergic to these mental health narratives. I hope some of the authors will read my comment and spend some time reflecting on it.

 

Im not gonna waste too much time commenting about this abomination other than emphasizing that it is a pile of rubbish

 

Also, this statement in the highlights seems to be wrong: "Results suggest the Fukuda case definition does not define a heterogeneous group."

I mean, they found that Fukuda DOES produce a heterogeneous group. The paper includes this sentence: "Differences between hiPEM and loPEM CFS patients amplify the heterogeneity of diagnoses resulting from the Fukuda criteria." And this:
"including PEM as a polythetic criterion for CFS is inappropriate."

So seems they haven't even gotten their own highlights correctly, unless I'm misreading something.

 

Lightning Process coach Live Landmarks summary of the study:
New ME research: PEM can identify patients with greatest benefit from psychological approaches

https://twitter.com/user/status/1207898719515037697

 

Anybody in touch with Nancy Klimas to see if she supports the conclusions here, and how the conclusions are already being used against us (as I assume that Live Landmark will declare that this is proof for the BPS side of things)?

 

@Emily Taylor ?

eta:

https://solvecfs.org/dr-nancy-klima...r-better-medical-education-with-sheknows-com/

 

That's almost funny considering the study self-selected against patients with PEM so this conclusion is invalid the same way PACE, which had some ME patients, cannot conclude anything about ME. And the study even suggests the obvious explanation which makes this conclusion even less credible, that obviously illness is a heavy mental burden, especially in those with no support.

 

I disagree with some of the comments made here. I don't think the study is that bad and I don't think Klimas has to justify herself.

The results aren't very surprising, perhaps rather obvious, but I prefer that researchers publish the data they have, especially if it's about a large group of 261 patients.

If I understand correctly, these were patients recruited for stress reduction trials. These patients had to fill in a CDC symptom questionnaire where PEM, amongst other symptoms, was assessed. So given the increasing interest for PEM, for example in the 2015 IOM report, the authors checked Fukuda CFS-patients with severe or very severe PEM differ from CFS patients who indicated very mild to moderate PEM.

There were some clear differences on the Fatigue Symptom Inventory and CDC CFS Inventory, but no significant difference on the Perceived Stress Scale or for Recent Negative Life Experiences. The authors focus on the results for mood and depression, which also showed a statistically significant difference between the two groups, although, as the authors admit, some of these might not survive corrections for multiple comparisons. I find it a bit strange that they didn't test what happens with these difference for mood and depression if they control for symptom severity.

If a ME/CFS patient with severe PEM has a depression than perhaps psychotherapy might be helpful. For me, it's mostly the sentence at the very end that bothered me, where they speculate that psychological distress associated with PEM is a maintaining factor by inhibiting patients from engaging in tasks.

 

If this were true, none of us would actually get PEM...

 

Well there is still a fundamental and glaring error showing that they were not overly careful with checking their work:

That comes off as just sloppy.

Also, and I know I am very cranky about this. I don't give a rats behind if the work they did here was brilliant and to be lauded. All they did was show for their own edification that people with ME might feel distressed at being ill. Colour me amazed.

Please, why is this necessary? Maybe I'm not understanding but the conclusion seems obvious. Glaringly.

Can't people who feel distressed decide for themselves how they feel and what they want to do about it? Or is that not relevant to what this paper is about?

Again, seeing this stuff as being worthy of publishing makes me cranky. What is the utility supposed to be?

 

https://www.psychiatryadvisor.com/h...c-encephalomyelitis-chronic-fatigue-syndrome/

 

As far as I can tell the evidence base for psychotherapy for depression is as poor as that for ME. Plus if you have bad PEM a psychotherapy session will probably trigger it.

If someone wants to do a study to quantify how crappy PEM is, maybe it's worth having in the literature. But it's frustrating to see yet another excuse to administer psychotherapy with no actual basis in evidence - even if it's 'supportive' for depression (although as noted the paper goes into 'curative' psychotherapy with the 'maintaining factor' line).

 

I think I have that. I wonder if it's related to my post-eating satiety and post-sleeping awakedness? I'm going to make a doctor's appointment so I can get tested for 'Alive'.

 

I see. I might have interpreted psychotherapy a bit differently, not psychoanalysis or correcting thought patterns, but having a psychologist who you can talk to, who supports you and might help in coping with a chronic illness etc. I suspect that might be helpful for some ME/CFS patients, even though we might not be able to test effectiveness with RCT's.

 

The explanation is Klimas likes to go to every party.

 

As someone who went through psychotherapy (not CBT or counselling) about 40 years ago I can assure people that it was not in the least supportive. If anything, it made me more depressed than ever. The woman I was seeing wanted me to take the blame for anything and everything I spoke about. The woman was also someone who kept to the "don't say anything and let the patient hang themselves" kind of therapist. So, we sat in silence fairly frequently, with her only occasionally deciding that she would say anything at all. And what she did say felt like constant accusation.