Designing a questionnaire on ME/CFS onset

Moved from this thread:
Research papers on type of onset (infectious, gradual etc)?

Not sure if this is useful but I have attempted to list what questions would need to be included in an survey of onset types, though obviously it is still open to problems of respondents misremembering or being mistaken. Tried to take into account all comments above.

Sorry it is not better formatted, but I currently don’t have a functioning computer that will talk to the internet. I would welcome any comments, edits, suggestions.

[corrected typos]

 

Some really quick responses in note form (sorry, I have to go out) to @Peter Trewhitt's useful list:

• I'd add pregnancy/childbirth to the lists of possible events.

• Some of the terms (e.g. cardiovascular or neurological event) might need a bit of explanation.

• I'm not sure about the term total remission. My remissions were more in the 80/90% range, and I suspect that 'almost recovered' could be at least as common as 'back to normal'.

Also, I realise that adding spaces for free form text makes it difficult to do numerical analysis of responses, but I don't think that should put researchers off from doing it. It's important.

it would actually be interesting to give patients whose onset wasn't entirely straightforward a simple tick-box sheet first. I wonder how many would be tempted to suggest that they know what triggered their ME (e.g., EBV), simply because there's no more accurate alternative? If they're later given a form that allows them 2000 characters to explain their onset pattern, the same patient may reveal that the reality is much more complicated. Effectively forcing people to give inaccurate or incomplete information isn't going to help scientists trying to research the condition.

 

Given this is about onset, I was trying to include information from those that appear to have had multiple onsets. This was not an attempt to access information on improvements and deteriorations, that are part of the cyclic nature of many people’s disease pattern, as this would enormously complicate the issue, rather just recovery and subsequent new onsets.

However it is difficult to know how to word this as people’s perceptions may change over time. Some five years into my ME I experienced what at the time I would have then called a total recovery, though retrospectively it was probably only a 98% or 99% remission still requiring some activity management. Five years later a bad case of seasonal flue resulted a major reoccurrence of all my previous symptoms which have persisted to some degree since, despite further improvements and deteriorations. Now retrospectively what I previously regarded as recovery, I have down graded to remission because of the subsequent re occurrence of my ME.

 

I wonder if it's also worth finding out if those with a less clear cut onset was diagnosed with another condition that could confuse the clinical picture.

In my own case poorly controlled hypothyroidism & frequent episodes of anaemia make it hard to be very clear about exactly what happened when.

I know for example hypothyroidism is a rule out but.....a person's thyroid output might still appear to be in the "normal" range but might be dropping at the time of rule out. Although in "normal" range the person might be feeling the effects of the change in levels or might be symptomatic at that level. If that makes sense.

Another aspect for women might be to find out if there are any gynae or hormonal issues. For example many women may be perimenopausal for years with lots of vague symptoms and generally feeling very below par. This could make recognition of onset less clear.

 

This is misleading. The first is that not all vaccinations are injected - (eg nasal flu or oral polio, typhoid, rotavirus, cholera, adenovirus etc).

The second is that I'd bundle 'other injection' under other medication/drug causes.

 

@Kitty, @Invisible Woman and @Snow Leopard thank for these useful points. It is always much harder than I think to put something down on paper that is straight forward and unambiguous.

 

"specify time from onset to first ME/CFS formal medical diagnosis"

It's been 20 years since my ME started, and I still don't have a formal medical diagnosis. There is no clinical test, so the best one could achieve is a doctor's 'professional opinion', and I haven't seen any point in bothering to get that. I think it might have been 8 or more years before I self-diagnosed ME. The Fukuda criteria were confusing, so I ruled that out for several years before I wondered whether there was a Canadian critieria (which I did fit).

 

Good point. I have experienced periods of full stop loss of stamina since meno that is distinctively different from ME.

 

Thank you @Peter Trewhitt for this.
So much study about ME has been neglected.

I wonder if all with ME will know which category best fits their circumstance: gradual or sudden. Maybe everyone knows....

My n=1 experience is that I originally understood that sudden onset applied to my case. It seems much of the ME literature points this way. It was years before I reconsidered my onset, and saw that it was gradual. It certainly doesn't help that the plethora of symptoms with ME can make things challenging to sort out.

Before ME really hit, I managed the bumps in the road, by just carrying on with a busy life. Taking on board a new, but quite manageable diagnosis( not ME), and just going ahead with life.

Then, the EBV I'd had earlier came back with a vengeance. (Actually, due to ongoing symptoms, I think it never really left.) What I thought I had when I became quite ill was a flu, until I had an EBV re-test.

I wonder if anyone else has had a similar experience, and was, or is unclear about how their onset came about.

As an aside, I also wonder if EBV in the acute phase can go on for years. Most of us have the antibodies to it. There seems to be tests to differentiate the acute from the quiescent phase, but I'd have to go back and read about this, as this info hasn't stuck in my memory.

 

Me too. I was struggling for a while and the whole fake it 'til you make health strategy means actively ignoring symptoms hoping they'll disappear.

It makes it hard to recall and pinpoint exactly what was going on at the time.

Which, of course, makes the whole BPS approach really laughable. I'm sure many of us here were absolutely convinced we could just ignore it and carry on.

 

@Invisible Woman

Yes. ME is very difficult for the MANY who carry on come what may.

I continue to ignore symptoms, up to a point, or I'd barely get anything done at all. A ME specialist told me not to ignore my symptoms. Not sure what that entirely means in the great scheme of things. I assumed it meant pacing. I pace perforce. And on top of that I consciously pace. Frustrating!

The BPS Movement seems to think the worst of the general public. This meshes quite nicely with the aims of the powers that be.

In the case of ME, and likely many other illnesses, most if not all, are desperate to recover. Some try a multitude of "treatments" even non-evidenced based ones (). Some end up in dire financial straights because of this. (If they haven't already due to their disability and being unable to work.)

We have a culture of carry on regardless. Anyone who doesn't could be immediately suspect.

 

You might want to consider either changing "virus" to the more general term "pathogen" or list the general pathogen types, i.e.: Bacteria, Viruses, Fungi, Parasites, etc...*

You already have "mould" on your list, which is a fungus, but you might want to keep it separate from the pathogens since it's also considered an allergen.

It seems pretty clear that ME can be triggered by more than one type of pathogen (I'm pretty sure that a bacterial strep throat triggered it in me), as well as by non-pathogenic triggers (as you've listed). The "trigger" may initiate some other process that remains chronic without the continued presence of the "trigger."


[* I think the other human pathogens are Protists (including Plasmodium which cause malaria), and Algae and Prions, which are fairly rare.]

 

That's all true but not quite what I meant.

Pre or around the time.of diagnosis I wasn't pacing because I didn't know what that was. I didn't feel well but I didn't know why. I was just ignoring symptoms completely (or trying to) in the hopes they'd go away. Until I just couldn't function at anything like that level anymore.

So not only was I wilfully trying not to pay attention to them, over 2 decades on & with cognitive difficulties, I'm not going to remember with a great deal.of accuracy. I'll remember only the most troublesome or striking.

This is complicated by pre existing comorbidities with some similar symptoms.

 

Would it be worthwhile to ask about severity of presumed trigger, too? We have some studies that found severity of acute viral illness was associated with increased risk of developing ME but long Covid now suggests this may not always be the case, at least not with all viruses.

I can't make up my mind about the "total remission" versus "almost complete remission" question. I've had two of the latter when I functioned at around 90% but still experienced PEM.

On the one hand I could argue I've had ME non-stop since 1977, just to varying degrees. I always feel a bit of a fraud doing that but if PEM defines ME and since I never recovered 100% it's a valid position.

On the other hand I wouldn't have qualified for an ME diagnosis during my almost complete remissions because my function wasn't "significantly" reduced then. So based on current diagnostic criteria I'm now having my third - separate - attack of ME.

This is something I haven't resolved in my own mind and as a result I'm inconsistent when filling in surveys, sometimes I date onset to 1977 and other times to 2012. At least both times were directly preceded by an unidentified infection so I can tick that box with confidence and without messing up data sets.


Applying that to the proposed questionnaire,

1. I could date onset to 1977 and not list anything for relapses from "total remission" because my remissions weren't total.
2. I could date onset to 1977 and redefine my "almost complete remissions" as "total remissions" because I didn't qualify for a diagnosis anymore, and list my two relapses in 1997 and 2012.
3. I could date onset to 2012 (and treat the prior ME episodes and remissions as pre-onset symptoms as I wasn't formally diagnosed at the time) and list no remissions or relapses.

Somehow option 2 feels most true but maybe that's because it's also describing the course of the illness, not just the onset. I don't know.

The issue of remissions significant enough to no longer qualify for a diagnosis needs some thinking through. If we declare everyone with a remission below 100% as still having ME we're disregarding current diagnostic criteria. What would be the implications of that, strategically speaking? On the other hand the requirement for "significant" or 50% reduction in function has always struck me as excessive, arbitrary and, frankly, nonsensical. Where do you draw the line?

 

I hear "chronic active EBV" quite often from patients so I looked it up and it seems to be a different thing from ME/CFS: https://en.wikipedia.org/wiki/Chronic_active_EBV_infection

But I kind of understand why they believe this, mine also feels like the symptoms just keep going on and on, even though the acute phase is over.

 

It is an interesting question.

To me, though, the term relapse clearly implies a continuation of an illness. If we're only looking back in time, we know whether or not the person who experienced a remission became ill again; and if they did, it suggests that they had ME throughout. I'm not sure the question of whether or not they qualified for a diagnosis during remissions is all that relevant.

For instance, my mum had psoriasis. For the majority of the time her symptoms would not have qualified her for a diagnosis, as she didn't have any. It's a type of relapsing/remitting condition, but a lack of symptoms, sometimes for years at a stretch, didn't mean that she could say she no longer had it.

There may be reasons why this isn't the 'right' example, but it illustrates the way I tend to view ME, at least in people who've had more than one remission/relapse cycle. I suspect it is possible to get it once, recover fully, and never have it again – a sort of acute rather than chronic type. (That was my uncle's pattern, he was ill for three years in the early 1980s but then lived the remaining 35 years of a pretty active life without any further symptoms.)

 

My experience was the opposite. I thought the onset was gradual, as I was gradually getting worse with time. Only after diagnosis did I realise it started with an acute viral infection-type illness (sore throat, fever, headache, cough, aches and pains etc). At the time I didn't connect the symptoms with the acute illness. I thought I'd recovered because I went back to work, but with hindsight it was clear that my ME symptoms started then.

 

Can you define relapse? I assume it is preceded by a recovery or remission. I experienced gradual worsening over several years then a sudden worsening after an event. Relapse does not seem the appropriate word, but I don't know how else to describe it.

 

It usually means getting worse again, after experiencing (whether due to treatment or the natural course of an illness) an improvement in symptoms. I think it's generally taken to mean deteriorating due to the same condition, though I suspect it's often quite hard to know for sure, specially as illnesses can trigger chains of events.

Recovery is usually considered to be permanent, at least in as far as that's possible when you're talking about health. Many people recover from bone fractures, but it doesn't mean they never suffer any further consequences. It's more that the fracture isn't expected to recur in the absence of trauma, the failure of materials used in a repair, or some disease process.

They're slippery terms, but it's probably impossible to come up with anything more concrete?

 

Yep.

My definition of a relapse is when you experience an 'event' and never go back to your baseline. You might develop new symptoms.

My 'event' was from taking immune modulators in 2001. At the time I was feeling 90% improvement and become very ill one month after taking the medication. My baseline dropped to 30%, and I developed orthostatic intolerance/impairment. I've recovered somewhat over the years, but the OI remains.