Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

It is possible I suppose. I checked and here is an earlier comment by the same account:
https://www.pulsetoday.co.uk/news/clinical-areas/neurology/poor-mental-health-increases-long-covid-risk-finds-study/


Poor mental health increases long Covid risk, finds study


Matt Hancock
9 September, 2022 9:53 pm
Dont think this is rocket science. Add it to the list with fibro , me etc

 

Don't think he'll be mistaken for someone who knows anything about anything, TBH.

 

Yep, he absolutely could be the kind of know-it-all-but-have-no-clue we all need to avoid, but since the same genuinely has been reported for both conditions he mentions, I wouldn't indict him just on these comments. I suspect that if he expanded on his comments, it would become abundantly clear that your interpretation is correct! But since he hasn't, I'd wait to see a third.

 

I'm not convinced that there is good evidence that poor mental health increases the risk of ME/CFS, though as you say it has been reported.
I think a lot or all of the studies that found this had the flaw that people could have been ill with ME/CFS but undiagnosed at that stage rather than truly being preillness.

This would cause problems in 2 ways:
(i) if you're not diagnosed, symptoms could be misdiagnosed as mental health problems
(ii) if you're not diagnosed but you are ill with ME/CFS, it's very stressful. It's quite likely you will have to work or study full-time and you are probably unlikely to be able to access many disability accommodations.

I remember Peter White did a study but didn't mention these possibilities.

 

Oh you don't need to convince me of that!

 

My ME doesn't involve a reduction in physical ability, so I'm basically as active as I was before ME, possibly more so, since I live in an area that encourages long hikes and bike rides, plus necessary chores (moving 100+ wheelbarrows of soil each year to patch my driveway, plus cutting and handling firewood). So, no deconditioning involved here.

 

I've been able to keep some level of fitness during my 32 year M.E career as long as I stay within my energy limits. I even pass people walking on the side walk.

 

I don't like is the focus on deconditioning. I often feel like I'm under the influence of a mildly toxic sedative. This has nothing to do with deconditioning. I suspect this is some low grade neuroinflammation. It is very hard to get any meaningful work done when affected this way, even when no muscles are involved. I'm significantly impaired before muscles even come into play. At the muscle level, if I'm affected, the muscles will tire quickly and be unable to perform as well, and this is a fluctuating effect which also seems inconsistent with deconditioning. There is without a doubt some loss of strength and endurance due to low activity but it's not something that should be emphasized when it's a lesser downstream effect (at least for me).

 

Mm.From some metabolic studies If females preferentially use amino acids as a base fuel if glycolysis is compromised would this down regulate fatty acids ( males seem to pop referentially use fats )
Or is this not a consequence

 

I thought you might find this interesting:
https://twitter.com/user/status/1761266473673318524

 

... and this:
https://twitter.com/user/status/1761514279910641740

 

There were four comments, now there are two though one still focuses on the Walitt comments.

 

Its not quite that, its more like we aren't going to try and objectively measure PEM (for the reasons given) but instead going to measure lots of things to see if we can find something that could be causing PEM. Of course they failed to make any real progress towards that goal.

Because they had Walitt in charge of the paper and they didn't want to admit they spent 8 million and 7 years to fail to find an answer. Perhaps the 2 day CPET results are less established that I would have thought. However, there have been 15+ 2 day CPET studies run with around 500 people in total (from Me Action and adding the Hanson study). If these studies failed to establish the 2-day CPET as a fact, then a 17 person study at the NIH would have added almost nothing. I'm with you that a much larger 2 day CEPT study would be useful in confirming or refuting these results. However, there are so many results I want to see confirmed and its hard to fault Nath for not running a completely different study. Would a 300 person 2-day CPET have been more useful in hindsight? Probably. But I can only say that because they didn't get more interesting results.

Until we have a good idea of what PEM actually is, it is going to be hard to objectively ensure that all the patients had PEM. Maybe for you and me our POTS gets objectively worse, but none of these participants had POTS (still unclear why) and I not sure what other measurable things you are talking about. As far as I'm concerned the people selecting the patients had a desire to appropriately select people with ME/CFS. Also if someone who has been diagnosed with ME/CFS says and acts like they have PEM, I'm inclined to take them at their word. Yes, it is a concern that the patients had less severe PEM than some, but that is always going to be the case for a study like this.

My guess is that they thought they were doing a deep dive on the pathology of PEM (or at least why people say they feel worse after exertion) with the tests on the days after the CPET. They did run lots of tests, unfortunately in hindsight they weren't looking in the right places or with advanced enough tech because they didn't find much. I agree this study was hyped up far too much for what they found and that is obviously very disappointing to me.

 

I spent a year on and off reading and interviewing before finally publishing my initial 15,000-word investigation of PACE. Added: As @Dolphin might remember!

 

on medication im very much able to weight lift and ive become quite strong over the last year
tell someone who can lift 25kg+ as a smaller woman that they are deconditioned when most lift <20kg lol

 

What do you mean by finding any differences? What are you comparing between the people did 1 CPET vs 2? The people who did the 1 day would still have PEM you just wouldn't pick it up on the 2nd CPET assuming a difference really does occur.