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

I don't ever have periods where I feel normal again.

Despite the damage, I feel I 'worked around' it. I don't think in precisely the same manner I used to. I've spoken to people who've known me all my life, and they agree. It's enough to imply a re-mapping process, at least to me.

I don't think I'm incurring any further damage (much).

I will say that a lot of our symptoms are very situational and I can easily go from minor to moderate over two or three days if I stop taking any of the OTC meds I use. I think untreated ME could very well lead to further damage, though all I have to go by are the fact of my white matter hyperintensities and that they were clustered around the areas responsible for language. My word-finding was so poor I was off-and-on aphasic at my worst.

It's still possible that's a coincidence.

 

Merged thread

MEA Summary Review: US study of onset patterns and course of illness in ME/CFS

https://www.meassociation.org.uk/20...-course-of-illness-in-me-cfs-29-january-2019/

29 January 2019

Charlotte Stephens, Research Correspondent, ME Association

Epidemiology studies are few and far between in the field of ME/CFS.

They are important as they can tell us how many people in a given population are likely to have the disease or are likely to develop it.

They can help to identify patterns which may give useful clues for studying the cause of ME/CFS and could help with diagnosis and treatment.

Their findings can also be used to help shape policy decisions in evidence-based practice (for example, the NICE clinical guideline) and demonstrate the impact of a disease to other official bodies and organisations.

This new epidemiology study from Dr Lily Chu (with help from Prof. Jose Montoya), describes the results from 150 respondents to a survey who met the Fukuda criteria for ME/CFS…

 

Full paper now available at https://www.frontiersin.org/articles/10.3389/fped.2019.00012/full

 

Short Twitter thread on this paper.
https://twitter.com/user/status/1092679108322947073

 

I haven't read the whole thing in detail, but when they say that 43% of their subjects reported a professional diagnosis of depression, seasonal affective disorder, or dysthymia compared to 7% of the US population, it's not clear to me if they distinguished whether such a diagnosis was made before or after onset.

 

Some interesting comments in this paper. It's full of interesting observations that closely align with my own thoughts.

This is interesting because I suspect that the subtle tension and increased heart that for me appears to precede crashes is due to autonomic nervous system activity.

Since I had a prodromal phase before the onset, I suspect that the illness was indeed already present in some form.

Consistent with my observations.

My story was prodromal phase, definite onset of relatively mild severity with worsening over the next few years, and then stabilization and continued disability.

Also, the patients with gradual onset may be underdiagnosed.

New information to me.

 

The Open Medicine Foundation is doing that at the moment, in their multi omics study.

 

I found this curious.

The risk of autoimmune diseases in first degree relatives is discussed here:
https://genetics.emory.edu/documents/resources/Emory_Human_Genetics_Autoimmune_Disorders.pdf

Two out of my three siblings have autoimmune diseases (Type 1 Diabetes, autoimmune Thrombocytopenic Pupura), so I found this association curious. My intial onset was not associated with an infection, but instead associated with an acute autoimmune syndrome.

 

I found it interesting in that it discusses the effect of the female reproductive system on ME.

My orthostatic symptoms have worsened during menopause, but it may just be coincidence. I have wondered if stopping the POP affected my fluid retention but GP was dismissive.

Not seen a any studies on ME, osteoporosis and bisphosphonates, but this must be of interest to a significant proportion of lake, men and women.

 

This is a paper trying to fill a major gap in research, looking at factors preceding ME and at the evolution of symptoms over time, something that just has to contain valuable clues.
But it's a paper of two distinct parts, one good and one disappointing.

The first part, the actual survey of patients, leaves a lot to be desired. Questionnaires about symptoms years after the event. Selection by Fukuda. The authors themselves estimate that about 30% of participants didn't meet any stricter criteria. Then there's the huge number of comorbidities, many of them psychological. Of course it's important to recognise that many patients do have comorbidities but it does mess with data. The authors explain some of the practical reasons behind their choices but still, it looks like a great big fat missed opportunity.
In the section Strength and Limitations they write "Our results also contribute to the paucity of data on the evolution of symptoms longitudinally". I suspect that wasn't exactly what they meant to say but in a way that's what they did by adding more low quality data.

By contrast, the second part, the discussion and review of their own and others' studies is nuanced and thoughtful, especially given the paucity of good data to analyse. Though some points could have been made clearer. For example, they observe that patients report significantly fewer postexertional symptoms later in the illness than at the beginning, and that patients explain this as due to 'treatment', by which they primarily mean pacing. That's fine as far as it goes but it's not made clear that the underlying condition hasn't changed. Readers not already thoroughly familiar with ME are unlikely to understand this correctly. More likely they would assume a reduction in reported symptoms due to a treatment is like somebody reporting reduced hayfever when taking antihistamines: treatment reduces symptoms and patient returns to normal activity. That last bit just doesn't happen very often in ME.

I do like their expression "stuttering onset" in addition to the usual either acute or gradual.

 

https://twitter.com/user/status/1094368826534346753

 

Seems to me there is a lot of murkiness still in how the study was accomplished.
It makes me want to scream "will no one rid us of this meddlesome Fukuda.

I'd like to see a study with some nice clean data. And then replicate it. Given that I know nothing about science I have the audacity to say I won't get excited until then. <sigh> I really want to get excited about some data.

ETA:sp

 

https://twitter.com/user/status/1094380384593330178

 

Most common co-morbid medical and psychiatric conditions reported by our subjects with ME/CFS compared to the general United States population and previously published prevalence among ME/CFS subjects

 

Comment from the lead author, Dr Lily Chu, shared with permission:

 

Not ideal, but it certainly highlights how every bit of progress is important and impact other things.

A patient registry would really solve many of those problems. For now some steps are duplicated many times and it's really inefficient.

 

Was just browsing ME/FM Canada and it seems that M Lapenna's patient registry site is up and running and being hosted by ME/FM

 

People can pre-register to join the Solve ME/CFS registry here, https://solvecfs.org/you-m-e-registry/

 

Indeed: http://meresearch.info/.

I registered. First I heard of it.

 

OOps, sorry for not supplying that link. What was I thinking.