Onset patterns and course of myalgic encephalomyelitis/ chronic fatigue syndrome, 2019, Chu et al

I don't understand why, for most of the conditions in this table, the numbers for Percentage with medical condition ever diagnosed is much less than Percentage endorsing condition as active/unresolved.

Logically, those that have ever had it should include those that have it now, unless of course, the question asked was worded differently than the table headings seem to imply (I haven't read the paper).

Or that most of those endorsing conditions as active have never been diagnosed (which may say a lot about the lack of medical care pwme get)

Just seems odd to me.

 

My guess is it is the percentage of those in the first column.

 

Reasonable to guess this but it is not the case.

 

https://twitter.com/user/status/1095070503977566208

 

I know my own case, it started with an infection, but could be called either a gradual or acute onset.
If I hadn't been playing competitive sports, I might have been inclined to call it a gradual onset and might have incorrectly classified the onset of the condition as a few years later. Once I gave up sports, I was in full-time education for four and half years. Compared to the much larger later impairments I have had, I was relatively mildly affected for the first few years. I also had fewer symptoms.

ME criteria have required acute onset (see for example https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5663312/ ) which may not be a good way to define the condition when clinically examining patients.

 

The gradual onset issue may also be relevant in terms of clinical diagnoses. Some strict criteria may miss people, perhaps particularly in the early years; a later diagnosis seems to give a worse the prognosis. I know I wish I was diagnosed in the earlier stages, when I was mildly affected and had fewer symptoms; I think there is a good chance I would never have become severely affected and to be severely affected for over 2 decades.

Stricter criteria could still be used in research.

 

Somebody asked about symptom prevalence decreasing over time: they suggest this could be due to treatments of one sort or another, not just pacing but also symptomatic drug treatments.

 

https://twitter.com/user/status/1095085988253175809

 

@Dolphin quoted:

"Another project might devise animal models capable of developing ME/CFS: if exposure to patient serum or a putative antigen replicates the illness in these animals, that would corroborate the autoimmune foundations of ME/CFS."

NO. That is NOT the way to go.

 

"Clinically, one infectious yet gradual onset sequence we have observed is a stuttering pattern whereby a subject experiences a severe infection, returns to near-normal functioning, but then experiences recurrent infections over months to years, recovering less each time, before succumbing entirely to ME/CFS. "

That actually sounds very like the description of the progress of the illness given by Ramsay, whereby people had almost normal health then relapsed. It describes what happened to me exactly; I dropped a level of health every time I had a serious infection (not the odd cold).

From descriptions people have given I suspect that many of them have had a trivial infection which gets worse until they get so ill they are diagnosed as ME/CFS. Acute onset, gradual illness progression. As the science stands it is not provable.

Obviously something must initiate changes in the body. I can't get my head round the way that some genetic diseases do not become apparent until middle age. It may be true that we are born with a weakness but manage until there is some stress which pushes us over our capability to recover.

I think it was the Adelaide outbreak where primates were given blood from patients and became sick.

 

https://questioning-answers.blogspo...-onset-events-infection-related-episodes.html

 

Hi, guys. I'm too foggy to read through this and only glanced at the article.

Was wondering is this a good study to share with a primary care physician (PCP) who might be open to learning more yet doesn't really know about ME/CFS?

My new one acknowledges that there's more that science doesn't know than knows and is open to patients sharing information.

I'm seeing him for a second time. I told him I've been diagnosed with ME/CFS and about my visit years ago with Dr. Chia. He wrote in my chart unspecified fatigue (and fibromylagia - which I don't have. I think he wrote that cause I was asking if he'd write an rx for LDN).

I will share the IOM report yet was wondering if this study would be good to share too. Thanks.