What is the evidence base for non-infectious precipitating factors?

[hibiscuswahine]

I think it would be hard to convince an insurer as they have different goals compared to lawyers, lawyers could possibly argue either case, as ultimately nothing is provable as we still do not know the exact pathological process occurring.

Clinically, in psychiatry, we have to weigh up what structural abnormalities may be occurring, in any patient, we try to rule them out with history and examination, history of in uterine exposures, birth trauma (eg hypoxic etc), childhood history of physical trauma, including what may appear to be an innocent fall from a tree, may have caused the onset of reduced school performance and not picked up until years later. A person can be physically abused domestically or outside home. That is never discussed until adulthood or even later as often becomes normalised and disregarded. Sports, especially contact ones, like rugby, can cause TBI and only just being recognised worldwide. Then there are all the known toxic exposures to the brain, eg. Lead, alcohol, methampetamine etc

So what causes and triggers ME/CFS as per the IOM definition, 75% appear to have an infectious onset, 25% don’t.

The only way to distinguish TBI from what people wish to see as “pure ME” would be through history and examination, neuroimaging, EEG and neuropsych testing.

I think there is a lot more we need to know about ME on the basis of research into the genome. I think it is multifactorial and complex and still many years out on getting a definitive cause and understanding of the disease process.

 

[Ravn]

Ravn IIRC i have oft read the 'trauma/surgery etc can cause/initiate ME/CFS' thing in ME Association literature, i think it might even be in the purple book but i dont have energy to look it up sorry. I could be wrong but i'm pretty sure I've heard Dr Shepherd say it in interviews too. So asking them/him via MEA fb might throw up something your group member would find helpful.

I believe this suggestion has been made to them. Though I did a word search in an older edition of the purple book and found the statement but no useful references to back it up. I don't have the most recent edition.

If it were me trying to get insurance, I'd focus on the fact of the illness rather than the cause of it.

I believe the process of documenting diagnosis & disability is well underway but:

It might be insurance against injury from a specific cause though - surgery or accident etc.

Yes, as I understand it, this is the case. And that makes it tricky.

Looks like the best available strategy is going to be referring to 'authoritative' sources like the CDC who list physical trauma and surgery as possible triggers (may pay to track back their references to see what they base it on).

Plus studies like the 2 in the OP that report on patient-reported events preceding their ME.

Are there any other such studies, especially newer or bigger ones?

For the record, the results of the 2 studies in the OP are as follows.

The 1997 study only looked at 134 patients of whom 6 reported (unspecified) trauma and 6 reported surgery, that's about 4.5% each.

The 2011 study looked at 1546 patients. Trauma is not listed as a category, the closest are motor vehicle accident 103 (6.7%) and, more tenuously, blood transfusion 98 (6.3%). Surgery is reported by 47 (3%). This study also took a separate look at patients meeting Holmes criteria (compared to total cohort Fukuda, I think), this gave slightly lower % for the above precipitating factors.​

So people are reporting physical trauma and surgery but not in big numbers.

Personally I'm leaning towards the all ME is post-infectious hypothesis, with asymptomatic cases and delays between very mild active infections and appearance of ME symptoms accounting for the seemingly non-infectious cases. I guess reactivation of viruses could hypothetically fall under that, too, which would be a tenuous link to physical trauma or surgery, the stress of which may cause a reactivation.

But all that is speculation so I don't want to categorically dismiss other possibilities. As they say, more research is needed...

 

[Ravn]

A more recent but very small study: Onset Patterns and Course of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Chu et al 2019.

Out of 150 (of whom not all replied to the question, maybe 132 did?), an accident was reported by 10 (8%) and the same for surgery, 10 (8%).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6370741/

 

[Jonathan Edwards]

A more recent but very small study: Onset Patterns and Course of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Chu et al 2019.

This is a retrospective questionnaire based study recruiting from wherever they could find people, including forums and support groups.

Not only is this likely to be very unreliable but it is an ideal way to generate memes that get further entrenched with further studies. It is the way to generate disinformation, not information!



And there is no control group.

 

[alex3619]

I don't honestly think there is any tangible evidence for ME being triggered by non-infectious factors.

It comes up from time to time that some pesticides trigger something like ME. Its primarily organophosphates. Other than that someone pointed out, on this forum I think, that its possible to get an infection and not know it.

This might happen as a result of injury as well. However if that were the case I suspect there would be more infections in our community after injury as a precipitating factor.

Too much speculation on all of this, not enough hard data.

Insurers may look for excuses to not pay claims. Certain pathogens have a history of showing up right before ME, appearing to increase the odds a lot, but other than those we have rather poor data in general. If someone claims some particular cause, and an insurer can cast doubt on it, it can be used as part of the reason to not pay claims. In my reading over the last few years the court cases that were won often have extra evidence of disability, including repeat CPET. Of course you have to be well enough to engage in a protracted legal battle, and insurers sometimes take advantage of that.

 

[Jonathan Edwards]

If someone claims some particular cause, and an insurer can cast doubt on it, it can be used as part of the reason to not pay claims.

But surely that is their job - only to pay out on their client's behalf if there is reasonable evidence of causation. Otherwise surgeons would be uninsurable because they would be blamed for all sorts of things. We now have a system in the UK where if you have an accident the repair garages hand out your registration number so that ghouls can find your telephone number and ring you to persuade you to make unjustified claims.

 

[alex3619]

But surely that is their job - only to pay out on their client's behalf if there is reasonable evidence of causation.

I suspect we are talking about different things. Liability insurance is not something we have to worry about much though occasionally it comes up.

Disability insurance is a serious issue though. If it gets to a court its often not necessary to prove causation, or a specific disease, only to prove disability. That is hard enough. Its usually done by proving some level of measurable incapacity. In some policies its not sufficient either, as it must be shown its not a mental disease, which are limited in pay-out, often to two years or so.

Was it one of the Unums in Europe that bragged about avoiding paying out on CFS/ME until the person had successfully completed a CBT/GET program? This was some years ago.

 

[hibiscuswahine]

Gets a bit tricky when NZ has a default no liability Accident Compensation Act depending on the nature of the accident, makes it quite different from other countries at times.

https://www.legislation.govt.nz/act/public/2001/0049/latest/DLM99494.html

An ACC lawyer should be able to help with the standard of evidence and level of incapacity and whether you can go down this route, if there is no clear liability from other parties involved. If you wanted a free legal opinion, a free community law clinic via the Citizen’s Advice Bureau may point you to the right lawyer locally (that may also involve going down an alternate route via Disability Rights law)

 

[livinglighter]

I cannot think of any very plausible mechanism. That does not mean it does not occur but I think vague ideas about disrupting neural circuits or perfusion should be treated with scepticism. At present there is no evidence or viable theory

Could mTBI be a cause of neural pathway disruption? I've read it causes changes to brain cells.

People talk of post-concussion syndrome but I am unclear how that relates to ME.

I suffered a brief loss of consciousness (didn't black out) during my acute viral illness which is often considered a possible cause of my onset of ME. But it also happened again when I relapsed following my remission, without viral symptoms. I've yet to have a clinician pick up on it because I never understood what it was in relation to all of the other symptoms I suffered, so didn't mention it, or the clinician I tried reporting it to didn't understand what I was explaining. But going forward it's one of the things I will be focusing on during new appointments.

I think post-concussion syndrome could be part of the problem - like me, many people may not be aware of the definition of the head injury symptoms they experienced, which for some people cause ongoing problems.

 

[Jonathan Edwards]

Could mTBI be a cause of neural pathway disruption? I've read it causes changes to brain cells.

I think that I jut too vague to be useful.
And we know what the effect of brain injury are from the more severe or repeated cases and they are not like ME. You can get dementia and Parkinsonian features but not ME.

 

[hibiscuswahine]

One can have both, a TBI and ME. They are two medical conditions. Yes they can look quite different but not everything is apparent on scans outside research institutions. The problem for a clinician and a psychiatrist is trying to tease out the symptomatology the patient presents with and the history they can take, it’s not an easy and quick process, the two conditions can be hard to diagnose and distinguish between sometimes, especially diffuse neuronal injury that may cause a vulnerability, then have another blow to the head and all adds up over time, but nevertheless, that can be the reality on the ground. We don’t know as far as I have read, and that makes it a contested illness and able to be contested medicolegally and via disability law.

In NZ, the person would need to be seen by several different specialities to form the evidence for a trial. So if an expert witness (not me, as I am retired and not an expert in neuropsychatry or ME in NZ) and really depends on what ACC can afford - they often do get overseas experts in, but often they just settle with a suitable sum of compensation because they don’t want to spend money litigating it to the Supreme Court and it becomes very complicated for all parties, in many ways. I am hoping, if this is a legal matter, the experts for ACC do not read this forum as a retired Professor trumps my opinion…). But also it would go on Aotearoa/NZ case law, lawyers and judges and although we inherited British law, we have developed some of our own, so always worth exploring all options.

 

[livinglighter]

One can have both, a TBI and ME. They are two medical conditions. Yes they can look quite different but not everything is apparent on scans outside research institutions.

Which makes things more complicated as to whether there are non-infectious precipitating factors. What would come first the TBI or ME? Non-infectious precipitating factors are well documented within TBI, and all ME symptoms are also TBI symptoms. I think it's important not to attribute all symptoms to ME as other conditions can and often co-exist.