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The Abundant Energy Summit

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
People who consider themselves perfectionists say so, while those who don't tend not to comment. I do think the idea that lots or all pwme are perfectionists has been overstated.

It's not always the case that pwme push themselves in the early stage of illness because of perfectionism or being 'driven' (when its unlikely they even know what illness they have).... It is the case that most people's lives do not allow for rest in the early stages of undiagnosed illness. What does one do? Abandon children, drop out of your career, stay off work which requires enough sick notes, drop out of university, stay off your cleaning job as too exhausting?

What on earth do people do, with GPs trotting out lazy diagnoses of stress, and pointing out that you are not stressed goes unheared, the boss breathing down your neck, uni tutors issuing warnings and deadlines you are too ill to meet.

If we all knew we had ME in the first weeks, and knew about pem, and rested from the beginning, we would still be at risk of losing our jobs, homes, education courses,

An early diagnostic test would be pure gold.

Absolutely. The reason most of us are as ill as we are is largely due to medical incompetence, lack of available, effective treatment, lack of belief and support.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
No time to read all 6 pages, but the promoters have been asking people in the ME/CFS community to endorse it. I think it looks like BS. I can't imagine why Myhill and Jason are involved in this.
 
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Jonathan Edwards

"Gibberish"
Messages
5,256
I think it's quite easy to see how such a driven person can be liable to push him/herself too hard - more than the average person. I believe that doing this when one has certain viruses can damage the immune system. This may not be how all pwME become ill, but I think that it may account for a significant subgroup.

Does @Jonathan Edwards know of mechanisms by which this could occur?

I don't think pushing oneself when one has a virus is likely to 'damage' the immune system. The symptoms of the viral infection might be amplified I guess but I am not aware of evidence that it would alter long term immunity to the virus or dysregulation. My thought was more that if you were pushing yourself, or whatever, and a virus came along the response might be more likely to set the hypothalamus into a regulatory loop expressed through HPA axis and autonomic system. But I am wary of theories that involve 'pushing' or 'stress'. These are the stock in trade of the psychotherapists who think they know how to solve things. I would prefer to stick to gathering objective data and finding correlations and trying to work out what might be happening at a physical biological level.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I would prefer to stick to gathering objective data and finding correlations and trying to work out what might be happening at a physical biological level.

I'd like us to be doing both, and more!

It will be an awfully long time before objective data are translated into clinical practice, and I have lost 20 years of my life to this already. I may only have about 20 years left. I hope to have more, but...

So I want to find out as much as I can about this accursed illness in order to try to figure out what might help me and others who are already ill, and all those at risk of getting ill in the future.

Thanks for the ideas anyway. I'm interested in all credible ideas. There is so much interplay between the different systems, and so many systems seem to be affected, it is hard to untangle the threads to try to find the start.
 

Aurator

Senior Member
Messages
625
But I am wary of theories that involve 'pushing' or 'stress'.
That's reassuring since it exonerates me to some extent from the suggestion (or is it an accusation?) I often hear that my illness is a consequence of overdoing things (I'm a former amateur athlete, who trained and raced quite intensively).

Somewhat incongruously, the same people who make this suggestion occasionally also say that there may have been something already wrong with me that predisposed me not to survive the training and racing workload unscathed, and that is why I got the illness. So I was doubly stupid, it seems, first for overdoing things, and secondly for not realising that my limits were naturally lower than those of normal people and not training within those abnormally low limits. The corollary of this second point is that besides being stupid I was weak and inferior as a physical specimen.

Just out of interest does anyone know of any other non-psychiatric illness in which there is a proven link between "pushing/stress" and developing the illness? Perhaps there is an obvious example I've missed.
 

Gingergrrl

Senior Member
Messages
16,171
Have not read this whole thread but have two additional points re: healthcare workers of which I was one for 16 yrs (social worker in hospital).

One- many hospitals and their outpatient programs were housed in old water damaged buildings with asbestos, mold and chemicals and workers were exposed to all kinds of things that made them ill as a trigger or component of their illness. I worked in a bldg for 10+ yrs that had been condemned by the health dept but no one cared.

Two- even if you were not a perfectionist (which I am not) you often worked in programs that were chronically short staffed and you felt an extreme dedication and loyalty to your patients so even if you needed time off for medical appts etc you knew your patients would be unattended to and this over rode taking care of yourself.

If you needed time off for illness this was frowned upon by supervisors and I worked full time an entire year with mild to moderate CFS, before my body and autonomic system failed, out of dedication to my job and my patients. Had I taken medical leave earlier it may have made a difference (or not, I will never know.)
 

redaxe

Senior Member
Messages
230
Just out of interest does anyone know of any other non-psychiatric illness in which there is a proven link between "pushing/stress" and developing the illness? Perhaps there is an obvious example I've missed.

If there was a cohort of people at risk of developing such an illness the most obvious example I could think of would be conscripted draftees at the army bootcamps. You take civilians, many still in their teens and throw them into a level of physical training and psychological stress that most have never experienced before.
If there was any record of medical discharges during the Vietnam conscription era or from countries that still have the draft that would be one place to look.
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
Just out of interest does anyone know of any other non-psychiatric illness in which there is a proven link between "pushing/stress" and developing the illness? Perhaps there is an obvious example I've missed.

From @MeSci 's recent post on a study on sleep and susceptibility to colds.:
After adjustment for potential confounders, participants who slept fewer than 6 hours a night were at roughly four times greater risk for developing a cold compared with those who got over 7 hours of sleep.

That is actually quite a plausible way in which physical and emotional stress might affect a person's immune system. You are up all night working to meet a deadline or you are up all night grieving or worrying about personal circumstances. The lack of sleep knocks your immune system and so you are vulnerable to an illness.
 

mermaid

Senior Member
Messages
714
Location
UK