Research papers on type of onset (infectious, gradual etc)?

I am looking for any good data on the different types of onset.

Ideally, this should be from a large, representative sample. I'm pretty sure that no such study exists.

From memory, I think that the Chronic Fatigue Initiative, CFI, did publish something on this, possibly a paper by Dana March. I also thought there was something from the CDC multisite clinic study, with both studies having around 200+ people in them.

I'm not sure if there are any other studies, but I'd love to hear about them.

I'm afraid my memory is rubbish and my googling powers are limited due to migraines, so any help with this will be appreciated. Any discussion of the issue likeweise.

Thanks

Simon

 

Not really a large or representative sample, but I think the paper by Chu includes some data and a discussion on this: Onset Patterns and Course of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - PubMed (nih.gov)

 

I wonder if the Solve ME/CFS Initiative might have something, either current-ish, or in their archives.

They used to be called CFIDS Association of America. (Chronic Fatigue Immune Dysfunction Syndrome)

 

Thanks, I really appreciate the information and suggestions.

I think it is amazing, though, that we don't have good data on onset type. It might provide powerful clues, as well as a useful tool for some grouping patients in research studies. Maybe those with an infectious onset are significantly different from those without?

 

There are some additional references in the 2018 S4ME thread: https://www.s4me.info/threads/who-said-80-of-me-is-post-infectious.7320/#post-130742

 

It is certainly of interest getting a better handle on the factors associated with onset, and it may be that better studies/surveys will significantly advance our understanding, however it may be that there will always be grey areas.

For example my onset was presumed to be associated with EBV and there was no distinction in my symptoms from the end of the presumed viral infection and the start of my ME. My apparent onset indeed could be pinned down to within an hour, most definitely a sudden onset. However the link to EBV was only established later by the presence of EBV antibodies, that equally could have been due to an early sub clinical infection. So far we have evidence of associations, which are by themselves not sufficient evidence for causation. Conversely we can not rule out that gradual onset or onset related to other causes were not associated with sub clinical viral infections.

 

My mother developed it after a biphasic infection which she appeared to have caught from her friend who was very unwell and in bed. I was also infected but recovered normally. In the following years I began to have PEM episodes.

I'm not sure that the infection is of great importance. My mother already had health problems before that and we have symptoms in common. The infection may have made an already existing problem much worse.

 

There was a big Q-fever outbreak in the Netherlands and a Giardiasis outbreak in Norway which were investigated. In both cases there was an increased incidence of ME/CFS or ME/CFS-like symptoms.

 

Agree, this is a big hole in the ME/CFS research. I have often found myself scouring papers for this and exasperated when the information just isn't there.

Chu's paper that @Michiel Tack quoted above is helpful for pointing to relevant papers.

It might be worth contacting Leonard Jason as his team seem to have a nice big dataset from the US, UK and Norway.

Table 3 in Pendergrast et al's 2016 paper is interesting. The data is divided into housebound vs not housebound. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5464362/

Sorry I don't know how to copy the table in here - would be grateful if someone could tell me for future!

Here's the text version:

Table 3. Illness experience of housebound (H) and not housebound (NH) patients.
H NH
N¼125 N¼411
N (%) N (%) Sig.
Illness began after
Infectious illness 95 (76.0) 272 (66.2) *
An accident 6 (4.8) 22 (5.4)
A trip or vacation 9 (7.2) 28 (6.8)
An immunization 17 (13.6) 41 (9.9)
Surgery 18 (14.4) 41 (9.9)
Severe stress 33 (26.4) 158 (38.4) *
Other 36 (28.8) 95 (23.1)
Illness developed
Rapidly (<1 month) 53 (42.4) 135 (32.9)
Gradually (<1 year) 28 (22.4) 115 (27.9)
Slowly (>1 year) 41 (31.8) 151 (36.7)

 

There is definitely a danger of some recall bias, however, in the case of ME/CFS, I do think we can learn a lot from these studies, for two reasons:
1. There is a proven causal link to CFS after a range of laboratory-proven infections. Dubbo looked at Ross River virus, Q fever and infectious mononucleosis. There's a good Peter White study on infectious mononucleosis alone (the lab test for mono does look for active infection, not just the presence of EBV antibodies). Plus the Norwegian giardia and Dutch Q fever studies already mentioned. Very likely, Covid 19 will be added to the list.
2. ME is a life-changing event and many people, myself included, had a bad infection at the start. That's not something that you recall later and make a false connection. It's something that slaps you in the face at the time.

However, this is also an important issue, particularly given Adrian's point about winter infections. There may be a trivial, unimportant associations that cloud the data.

Decodeme is planning to ask people a) if they have an infection and b) if it is lab confirmed (Covid, glandular fever, other). So there will be some data on this and the ability to compare lab confirmed with more general infectious onset.


Be very interested to know if Solve our collecting such data: they have more extensive surveys and Beeld explore the issue in more detail.

thanks again to everyone who has commented here. There is definitely a project here, compiling all the onset data. I think it would be very valuable and I'd love to do it myself, but am, unfortunately, much to ill.

 

Infectious mononucleosis: the Dubbo study and "Risks for Developing ME/CFS in College Students Following Infectious Mononucleosis: A Prospective Cohort Study, 2020, Jason et al"

H1N1 (in Norway): Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is associated with pandemic influenza infection, but not with an adjuvanted pandemic influenza vaccine

Data on gradual onset can likely be found in older papers by psychological/psychiatric research groups, but the samples would be contaminated by the use of loose diagnostic criteria (Oxford, Fukuda).

 

That's a good point. What we really need are two questions:
— sudden (needs defining) versus gradual onset
— specific triggers: infectious and others.

Sudden onset and specific triggers are likely to give the most reliable data. I'm not sure how you would investigate triggers of gradual onset where it is likely to be harder for people to be clear what exactly it is that was the trigger and there is a danger recall bias.

 

I agree about the unimportant etc associations. Also, my observation in Facebook groups: EBV seems to be such a well-known trigger that a lot of people associate it with their disease, either based on the fact that they have antibodies (which I think most adults have) or that they had mononucleosis at some point but much earlier. For example I remember someone who said her mononucleosis 8 years before the onset of her ME/CFS was the trigger. I think this also complicates things.

 

What about those with two or more possibilities such as my wife? Infection during post-op recovery. Possibly less unusual than people might think. Although there may have been something going on before that, because bike balance had become a bit flaky.