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

That sounds as bad as the shrink I went to (someone my Dad knew) when I was on the verge of a breakdown. I was 17 or so. I remember him asking whether I had orgasms or not and his mimicking with his hands the actions of the male and female parts, I kid you not.

I was not consulting him about sex nor any break-up.

But this was 50-odd years ago. I felt sorry to learn that this shrink's son committed suicide shortly after my session with his father.

 

I’ve not read the article, what stands out to me is:

We (ME patients on forum(s)) are aware of PEM being a hallmark and telltale factor of this illness and the BPS guys have often chosen to ignore it.

What a great tool they have here to play with - in essence they could now embrace PEM as a “reality” in order to declare that “some trial” found (maybe) that PEM identifies patients who are most in need of psychological therapy.

Reminds me of the “catastrophising” and “false illness beliefs” that get spun around at conferences and on social media by BPS peeps.

This feels like “someone” has turned PEM to their (BPS) advantage .. or they’re trying to.

I’m kinda getting beyond being insulted (my experience dumbed down, twisted and psychologised) but today I am because PEM is PEM, that’s all there is to it .. no need to analyse me, I go beyond limits because I’m not afraid (I should be ‘cos PEM is horrendous) but if I get a better day I can’t stop my excitement to feel a bit of normality.

I do not carastrophize

PEM happens to me because I tend to not hold back. Bit of energy.. grab with both hands.

I don’t talk myself out of doing things with “what ifs” (as it seems the BPS guys presume).

The only reason my mood lowers is when I am bad. Bad means I’m greatly restricted in what I can do .. that sucks because I want my life back. Simple as that.

BPS guys fascinate me really, the way they obsess about ME (cfs). I mean, why are they so fixated on this illness. They need to calm themselves down and let go.

I do think psychological therapy has a place and can be very helpful, but what they’re doing here is not helpful for my psychological health because I end up dealing with stigma and that is no joy ride.

 

There is a big difference between a therapist telling you that things will be OK and one that thinks their job is to cure your illness.

 

That's something that in most diseases family support and professional services will provide regardless of circumstances. The resulting distress is largely caused by the discrimination and resulting abandonment by family and community, itself caused by the medical profession's abdication of its normal duties.

No need for therapists, BPS folks just need to get out of the damn way and it will remove the problems they created and perpetuate. Not a short-term solution but psychotherapists who are misinformed about ME will never be an adequate solution anyway. Especially as the usual approach is gaslighting BS, that is most definitely not helpful. Starving people don't need cooking lessons and admonishing about why they can't stretch no food to last several days, they need the "no food" part resolved. Everything else is superfluous.

That and the relationship between PEM and effective therapy would be inverse anyway, high PEM is precisely the worst time to add stuff, it's only at their most functional that pwME can actually take on something like this. So this is exactly the worst possible advice in the circumstances.

 

Is the cohort representative then? (real question, not rhetorical )

 

@Medfeb do you think there is any point in contacting Nancy Klimas about this, as it is being used to promote psych-based approaches?

 

Sure, contact her she can add her name to yet another endorsement.

 

http://www.virology.ws/2019/12/24/trial-by-error-pem-is-bad-and-so-is-fukuda-new-study-finds/

 

The study may turn out to be very interesting at some point - not meant to be a joke (for the selfcontradiction).

So far an interesting question would arise: what would be able to explain:

• a greater burden in baseline but not experiencing as much a worsening of symptoms after exertion (PEM/PEF)
• vice versa: experiencing a greater worsening but being at a lower basic suffering level.

(not listing the two other two possible relations)


I thought that their statements in respect of the psychological states are unimportant to the study, it also seemed to me that they haven´t a clear position here, in fact hasn´t Klimas investigated the HPA axis? if I remember rightly? This may be the contribution, with - still - requesting it´s own and further evaluation. - But I havn´t read the paper again (for sure worth to point nonsense out).

 

Wrong. What about an adverse reaction to exercise and exertion? To be fair she doesn't seem to use the phrase ME but surely she's aware of the confusion? She could have mentioned somewhere that ME is a separate illness or put something in there about stricter criteria.

 

I do wonder if psychologists are planting the seeds of their own destruction.

Everything they look is twisted to give the conclusion- more research needed and/or more psychological intervention. Thus (blatantly) more work for me and my pals.

In my own career, my employer supplied both equipment and expertise. Even though it wouldn't put anyone's health at risk it was considered highly unethical to make recommendations that were not in the best interest of the client. Even if that meant we didn't sell as much kit. So, occasionally, I would recommend to my client that their interests would be better served NOT investing in more technology, maybe using what they already had differently, or it was actually cheaper and more efficient to employ an extra person instead.

With notable exceptions such as Carolyn Wilshire, David Marks etc, psychology as a profession seems completely devoid of basic ethics. Surely one day, this placing their own interests first, will come back to bite them?

(It's Christmas. A girl can dream....)

 

That's just a listing of the study on the University of Miama's website - some of the authors are from there.

 

How To Exercise If You Have Chronic Fatigue 0
Jul 15, 2020
Any amount of exercise can leave Chronic Fatigue Syndrome (CFS) patients exhausted or even bedridden. In today’s podcast, my guest is Dr. Nancy Klimas, ME/CFS researcher and clinician. She shared exercise tips for patients with CFS and Gulf War Syndrome, as well as a treatment strategy to improve fatigue and other symptoms. https://drruscio.com/how-to-exercise-if-you-have-chronic-fatigue



eta: interview starts around 3:30 (before that is largely sales pitch for his supplements etc)
eta2:

Code:

https://drruscio.libsyn.com/how-to-exercise-if-you-have-chronic-fatigue

eta3: much better than I expected; not all about exercise but the bit that is explains it well imo, latter part is about current research, on hold due to covid.