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Is PEM only found in cfs?

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Psychological stress does that to me and causes PEM.

I think valentijn's examples are mostly mental stress, rather than psychological. Mental stress seems different, but overlapping.

In fact, if you take the example of reading, it overlaps with physical too. As we would be straining our eye muscles, and mentally having to process all those words, and psychologically it could be stressful reading about the character's hard times.

Good explanation! :)

It's sort of a junk diagnosis. Like someone complains of stomach pain and they can't find anything, so he has "gastritis" or inflamed lining of stomach. At least doctors may believe he has stomach pain, but it's junk because it's the label after they were stumped.

Like "It's (probably) a virus." That too is a common one for doctors to spout when they don't know what's wrong.
 

anniekim

Senior Member
Messages
779
Location
U.K
I'm curious how frequently others experience PEM after strong mental or emotional exertion, as well. Physical exertion definitely triggers it (and yet I still go shopping every Black Friday...) but I am currently experiencing a rather nasty crash related to mental exertion from yesterday. It didn't even hit first thing in the morning, but after I'd been up for a few hours today. Although that's not really atypical, I suppose.

At least for me, mental stress tends to cause me physical stress. It seems to make sense - heart rate goes up, breathing gets rapid, muscles get tense.

Physical, mental and emotional exertion above my limits all cause a crash in me. Emotional exertion can be the hardest as hard to control stress at times. My beloved dad die died unexpectedly 22 months ago, the stress and shock caused a further deterioration in my health
 
Messages
21
Location
Clifton Park, NY
Costochondritis Is more of a thing then alot of psychological diagnosis. Its quite common and its real. Maybe the psych doesnt want u to believe u have a real physiological issue, it takes away from his psych diagnosis??
Oh no, it wasn't like that. He's very mind/body oriented, and the comment was meant to suggest he was glad that my primary care doc figured out I needed some ibuprofen to kill the inflammation (since the acetaminophen I'd been trying didn't touch it) - but telling me I had costochondritis didn't provide any answers as to why my rib cage randomly decided to become inflamed, when I'd never experienced anything like that before.

I mean, the good thing was that having that label for it helped me know just what to do the next time I had chest pain like that - pop some ibuprofen and not immediately freak out about having an early heart attack - but I don't know why it happens now or if there is anything I can do to prevent it.
 
Messages
21
Location
Clifton Park, NY
Physical, mental and emotional exertion above my limits all cause a crash in me. Emotional exertion can be the hardest as hard to control stress at times. My beloved dad die died unexpectedly 22 months ago, the stress and shock caused a further deterioration in my health
I'm sorry about your father's death. We found out my dad's cancer came back this summer, and my health took a downturn after his two close calls where we almost lost him again. I don't want to think about the inevitable. How are you coping now? I know that sort of emotional pain doesn't just go away.
 

knackers323

Senior Member
Messages
1,625
Has anyone ever tried to contact bill gates, Richard Branson, trump, dick smith directly? Or some other philanthropic organisation?

It's probably a long shot but, you never know if you don't try. Maybe we could get a petition going to include in the letter?

I will put my hand up and contact dick smith today

Done. Lets see if I get a response
 

anniekim

Senior Member
Messages
779
Location
U.K
I'm sorry about your father's death. We found out my dad's cancer came back this summer, and my health took a downturn after his two close calls where we almost lost him again. I don't want to think about the inevitable. How are you coping now? I know that sort of emotional pain doesn't just go away.
Thanks Twilight. I'm so sorry to hear about your dad. It does feel less raw now, but of course I miss him and his love and care. I am very close to my mum and together we love to talk about him and remember what he meant to us. Sending you love

PS I realise after writing the above you may also be asking me how I am coping physically. unfortunately, my health hasn't improved and I 've been totally bedridden for the last year. This would have made my dad sad as he so wanted me to improve not get worse
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
It would be helpful as a biomarker if it is indeed unique to us.

Sounds like more testing is needed where this is compared to other illness?

yes I agree - I think it is a good question but needs more testing ; PEM is also found in Ehlers-Danlos Syndrome and, I think, POTS

good issue to debate and research IMO


Ally
 

rosie26

Senior Member
Messages
2,446
Location
NZ
There's a Dick Smith Electronic's store just down the road from me :)
 
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Tristen

Senior Member
Messages
638
Location
Northern Ca. USA
Also my abnormal response to exertion, as I am sure like others, can not only cause an exacerbation in symptoms for a few days or weeks but a long term reduction in functioning. I was mainly housebound until 3 years ago when I stupidly did a 200 metre walk. From the next day I went from being able to mobilise around my flat, sit upright in a chair to being only able to walk a couple of steps and always having to be in a reclining position. 3 years on I have never got back to the level I was pre that short walk, it had a devastating impact on me. I would love to know what was the pathology behind it all...

I would get an exacerbation of symptoms (PEM), following physical or mental exertion. Also with, catching a new infection like the flu,....also with exposure to heat (had to stop one of my favorites, hot tubs).
 
Messages
15,786
I would get an exacerbation of symptoms (PEM), following physical or mental exertion. Also with, catching a new infection like the flu,....also with exposure to heat (had to stop one of my favorites, hot tubs).
Immersion in hot water is horrible. Even for normal people it raises heart rate considerably, which we just can't handle. My heart rate would get to 150+ after a relaxing bath :wide-eyed: And it would take hours to get near normal again, sometimes several days.

I do showers now, with a bath stool from Ikea. It's still a difficult activity, but way less debilitating.
 

waiting

Senior Member
Messages
463
I agree. I think I read this before. However to get the 2 day CPET full recognized requires this be formalized, and results replicated other than by Workwell. That will then send a powerful message.

@alex3619, Yes, Workwell's 2-day CPET has been replicated, by at least 2 other researchers -- Betsy Keller in Ithaca, New York -- and I believe the other is Vermeulen from The Netherlands (see IACFS/ME Primer -- reference #23:

"Vermeulen RC, et al. Patients with chronic fa-tigue syndrome performed worse than controls in a controlled repeated exercise study despite a normal oxidative phosphorylation capacity. J Transl Med. 2010 Oct 11; 8:93."
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
The 2 day CPET needs to be replicated with high specificity and selectivity.

The Vermeulen paper only had 15 subjects and 15 controls. I think that is too small. Its focus was also different - they were looking for oxidative phosphorylation problems.

The Betsy Keller study is discussed here:
http://www.cortjohnson.org/blog/201...er-exercise-testing-chronic-fatigue-syndrome/

I don't think her paper is published yet. It appears to be a large enough cohort to have some impact.

None of these studies can be double blinded. Like in psychopsychiatry its impossible for patients to not be very aware of what testing (usually treatment in psychopsychiatry, eg. CBT or GET) they are receiving. In any case unlike psychopsychiatry the CPET is a 50+ year old test, objective, well known and understood. Its objective, and probably from extremely hard to impossible to fake.

We usually don't have the money or resources to properly replicate findings. The 2 day CPET is too important to let it sit in limbo in my opinion.

When Betsy Keller publishes (I didn't find it, if anyone has a link please let me know) then we can begin pushing this issue.

There are also numerous patient tests from various doctors. I wish these could be combined in a database, like at the Open Medical Institute or something. That might also assemble enough data to make an impact when published.
 
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bertiedog

Senior Member
Messages
1,738
Location
South East England, UK
Exercise intolerance is feeling unwell during or immediately after exercise. Its typically because there is insufficient oxygen or fuel during exercise. So if something blocks energy production during exercise, whether it be lack of oxygen or lack of fuel such as glycogen, then you get symptoms. Those symptoms can persist for some time, and may impact other symptoms.

The key point is though that the underlying energy deficit restores within a few hours after exercise, and especially with a night of rest.

With ME we can have this too. However our energy production is worse after that rest, not better. They are still trying to figure out why this is. Something changes during exercise, something that alters either the capacity to get enough oxygen or to convert fuel to energy. This is often a 30% decline. If I recall correctly there have been cases of a 50% decline, though I could be wrong about that.

Contrast this with almost any other disease. The typical response is a 7% increase in energy the day after exercise. This is the opposite of what we see in ME.

There has been focus on mitochondrial dysfunction and vascular dysfunction, both of which might impact this.

This oxygen thing is so relevant I feel. Since breathing oxygen from my concentrator it has made a huge difference to me and I can almost avoid the next day feeling of being unwell. If I know I have done a bit too much walking and I get to feel exhausted I know this is bad so will use my concentrator for up to an hour whereas if it is a more normal day I will only use it for 1/2 hour.

By doing this as mentioned I would say that I no longer have post exertional malaise, at least not the next day it will be much more immediate. It comes on straight away from doing too much and might stay that way during that evening but after a night's sleep then I will still feel tired first thing but after having something to eat and using the concentrator for an hour I will start to feel better. Probably a bit stiff and tired but if I actually get on and start doing something physical I will feel better and not worse.

This didn't happen before getting the oxygen concentrator 18 months's ago. I would feel awful the next day and unable to do much at all so our inability to exercise or to exercise for a limited time (say 30 minutes maximum in my case) is key to our problems I think.

BTW Taking 3000 mcg of a transdermal B12 spray which Dr Myhill says is Cynacobalamin has made a big difference to me being able to do physical stuff for longer so I also see a connection to a B12 deficiency for some of us.

Pam
 

bertiedog

Senior Member
Messages
1,738
Location
South East England, UK
The 2 day CPET needs to be replicated with high specificity and selectivity.

The Vermeulen paper only had 15 subjects and 15 controls. I think that is too small. Its focus was also different - they were looking for oxidative phosphorylation problems.

The Betsy Keller study is discussed here:
http://www.cortjohnson.org/blog/201...er-exercise-testing-chronic-fatigue-syndrome/

I don't think her paper is published yet. It appears to be a large enough cohort to have some impact.

None of these studies can be double blinded. Like in psychopsychiatry its impossible for patients to not be very aware of what testing (usually treatment in psychopsychiatry, eg. CBT or GET) they are receiving. In any case unlike psychopsychiatry the CPET is a 50+ year old test, objective, well known and understood. Its objective, and probably from extremely hard to impossible to fake.

We usually don't have the money or resources to properly replicate findings. The 2 day CPET is too important to let it sit in limbo in my opinion.

When Betsy Keller publishes (I didn't find it, if anyone has a link please let me know) then we can begin pushing this issue.

There are also numerous patient tests from various doctors. I wish these could be combined in a database, like at the Open Medical Institute or something. That might also assemble enough data to make an impact when published.

I have had a demonstrable test on my Autonomic Functioning at the Breakspear private hospital in the UK that showed when my body was stressed just by taking 6 deep breaths over one minute, after lying down and relaxing for 10 minutes, the oxygen in my cells was under 50% of what a normal person's should be. It was after that test that I was told to breathe oxygen for up to 3 times daily and also that I would notice a big difference. That was so true. Details of this test are on the Breakspear's website I believe.

Pam
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
The 2 day CPET needs to be replicated with high specificity and selectivity.

The Vermeulen paper only had 15 subjects and 15 controls. I think that is too small. Its focus was also different - they were looking for oxidative phosphorylation problems.

The Betsy Keller study is discussed here:
http://www.cortjohnson.org/blog/201...er-exercise-testing-chronic-fatigue-syndrome/

I don't think her paper is published yet. It appears to be a large enough cohort to have some impact.

None of these studies can be double blinded. Like in psychopsychiatry its impossible for patients to not be very aware of what testing (usually treatment in psychopsychiatry, eg. CBT or GET) they are receiving. In any case unlike psychopsychiatry the CPET is a 50+ year old test, objective, well known and understood. Its objective, and probably from extremely hard to impossible to fake.

We usually don't have the money or resources to properly replicate findings. The 2 day CPET is too important to let it sit in limbo in my opinion.

When Betsy Keller publishes (I didn't find it, if anyone has a link please let me know) then we can begin pushing this issue.

There are also numerous patient tests from various doctors. I wish these could be combined in a database, like at the Open Medical Institute or something. That might also assemble enough data to make an impact when published.

I was a bit surprised by the claim in the Vermeulen paper that

The plasma creatine kinase levels before and 24 h after exercise were low in patients and controls, suggesting normality of the muscular mitochondrial oxidative phosphorylation.

I don't know whether plasma CK is a reliable measure for oxidative phosphorylation. The authors justify its use thus:

Plasma CK was determined as a surrogate measure of a decreased oxidative phosphorylation in muscle, since the previous finding that in a group of patients with external ophthalmoplegia the oxygen consumption by isolated muscle mitochondria correlated negatively with plasma creatine kinase, 24 h after exercise.

Seems a bit odd to me, although I am not an expert in such things. AFAIK decreased oxidative phosphorylation is a common finding in ME/CFS.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Delayed PEM is common but not a definite thing. My onset of PEM depends on how much I exerted and what kinds of exertion. If I did much, my onset is 1 to 3 hours! Perhaps less. Edit: I should add I have Fibro too, that may account for differences.

It is more about the duration of PEM. In the primer for practitioners, the M.E. experts write "Recovery is delayed, taking more than 24 hours".

Also our type of PEM is not only physical pains, but we have intensified cognitive symptoms and other symptoms. I believe many people assume PEM is feeling sore or tired, when it is many more symptoms (at least for those meeting the ICC definition of M.E.)

yes agree
I wrote a post on this somewhere a year or so ago suggesting there may be different kids of crashes and the differenc between crashe and PEM and suggesting 4-5 ways to classify and identify them. Dyscognition is the new name for brain fog btw ! sounds much better .

Iwill look for it and repost

Ally
 

Izola

Senior Member
Messages
495
for some of us there need not be a second test. I have known people who almost immediately go into anaerobic mode. I was tested almost 20 yrs ago long before I totally disabled. Far less than a minute I was in anaerobic mode.

The CPET test results are a marker of a disease state and with ours, a unique disease state. I would like to see the results of people with various diseases to show whether any other disease has this definite of a marker. Post exertion relapse is not the same as being exhausted tired after a big day doing a lot of stuff.

On the second day of testing, I would have to be dug out from under my covers and hand carried to the testing site. I certainly would not reject the second day test--just that my body would be kicking and screaming all the way there. Oops. I forgot, my body can't kick.