Unknowing-Knowing: Epistemological Crisis in ME

“Where is the wisdom we have lost in knowledge? Where is the knowledge we have lost in information?” T.S. Eliot

This post has been percolating in my mind for some time, but it is a tricky topic to articulate well which has meant I’ve delayed writing it and now I worry I’ve written too much. Please bear with me.

Anyone who experiences acquired disability or serious, long term ill health goes through some form of personal crisis in terms of how this relates to the rest of their life. Often this is experienced as a psychological trauma because of the unravelling of previous assumptions. This may be a form of Existential Crisis as everything that was previously purposeful in their life is gradually, or suddenly, stripped away. Many people lose their religion, whereas as other people discover a new religion. However, in the contested, marginalised condition of ME I think that this often takes the form of an Epistemological crisis rather than an Existential one.

Epistemology is the study of knowledge: what we know, how we know it, how we know we know it, and how to keep track of it without driving ourselves crazy. Vocabulary.com

Warning: you may not want to read this if your sense of how you know things is safely intact!

Trust Me I’m a Doctor

The first step down in most of our descents into Epistemological Crisis is likely to be in a doctor’s office. Something in us has changed dramatically and we can no longer sustain activities of daily life. Something is very wrong and the doctor will know what to do. The tests show nothing wrong. The doctor tries to calm us down, all they can see from their side of the desk is health related anxiety. We may agree to SSRIs which probably make us feel worse (or in some cases it helps a bit but possibly to do with effects of serotonin unrelated to anxiety/depression).

Longer term we lose our lives as we knew them. Unsatisfied and undiagnosed we move on to doing our own research online. We find plausible diagnoses. We question the authority of the doctor to own medical knowledge about our bodies. In a lucid moment we realise that they would only know what was wrong if they already knew about the existence of what may be wrong, in order to test for what is really wrong. They test what is in a small sample of blood but they’re not testing whether there’s enough blood (hypovolemia), whether you have enough blood pressure oomph to move the blood around (hypotension) or whether your autonomic nervous system is controlling the movement of blood properly (eg POTS, NMH).

After a lot of reading we start to feel like we know more than our GP about these sorts of issues. This feels arrogant and transgressive. They still hold the power as the gatekeepers between us and treatment, benefits and social acceptance so we need to play the “pleasant young lady” described in the letters between GP and specialists. We play the correct role, surreptitiously hinting at diagnoses. When we eventually get the ME diagnosis we planted in their mind the sense of victory is very short lived because the diagnosis achieves nothing in itself. It is an ill-defined, stigmatised condition with no reliably successful treatment. How is that a useful diagnosis? We then doubt our previous arrogance because would we really know if it was something else? A useful diagnosis may have been missed but once we’re diagnosed with CFS/ME the symptoms are so wide-ranging everything we get is “expected with your condition” and left uninvestigated.

We are left disillusioned with Western medicine as it has not provided us with any useful knowledge of cause, treatment or prognosis.

Trust Me I’m Different

When Conventional Medicine falls short the logical alternative is easily identified as Alternative Medicine afterall it’s in the name… Lots of people swear by acupuncture (or similar) so we throw ourselves into weekly treatments. It does help. It doesn’t cure though and we can’t afford weekly treatments indefinitely. Talking to our therapist they suggest lots of other forms of alternative health such as homeopathy, Emotional Freedom (EFT), crystal healing etc etc. We have done our best to be open-minded but these ideas push our credulity too far. It undermines our faith in them as someone who knows about our health as they don’t seem to have a filter, accepting all ideas equally. This type of person may have some really useful knowledge but it is mixed in with so much noise it is too hard to pick out what is useful.

Trust me I’m a Professor

We become cynical about alternative therapies, wary of being taken advantage of. It should be more evidence based (eg see the Good Thinking Society). We oscillate back again at this point, but more towards medical research rather than the doctors themselves. What does research have to say about ME? We want objective evidence, large sample size, double blinds. Then we will know.

Once again ME shows up the flaws in ways of knowing. It reveals the biases of Science. It is a marginalised condition, so it is pushed to the sidelines in terms of funding, irrespective of the severity or incidence of disease (see this post). An historical bias exists towards psychogenic causes, so more funding is allocated to studies on behavioural and psychological changes than biomedical ones. This leads to most results, and in turn treatment, relating to non-biomedical approaches. The nature of the research is socially constructed, not existing in an objective vacuum.

We start to talk to other patients online and they raise other concerns about the nitty gritty of high profile studies. We regret not doing a Research Methods Masters degree before getting ill, as that is clearly required to gain any sense of what is going on. Published studies can’t be taken at face value.

From Phoenix Rising via @firestormmer

via @TomKindlon

We are told that Graded Exercise is good for us. We look at patient response (above). We notice the increase in people going FROM moderate TO severe with graded exercise. We think about the biased nature of funding, preference to publish positive results, difficulties reproducing results, questions over measuring recovery.

We no longer trust the research as a reliably valid source of knowledge. We even start to question the questioning of alternative medicines. Is this a form of xenophobia? Why is the Western Scientific method way of knowing privileged over other cultural forms of knowing?

Trust Me I’m Like You

We increasingly turn to other patients in our community. Online interactions are a lifeline. These people do seem to know.

Even this source of knowledge became uncertain for me recently when I watched this TEDX talk on Astroturfing (corporate or political organisations seeming like grassroots voices)

A new study shows great results for x drug you Google it, ask people on twitter and facebook, look on Wikipedia, WebMD (a not for profit site) and then you go to the original study itself. This caught my attention because it is pretty much the trail I’d do for any new supplement or medication. It seems pretty thorough. It all confirms how beneficial x is. A few whispers of cancer risks are dismissed as quacks and cranks and nuts. But what if this isn’t all as it seems? Or is a Truman Show esque reality carefully constructed all around you?

Sharyl Attkisson says that Political and Corporate groups disguise themselves as grassroots, getting individual Twitter and facebook accounts, starting blogs, posting comments online. Supposedly this is now emphasised more than lobbying government. The point is to create the impression that there is widespread support for an idea (social proof) when there is not. If you disagree you feel like an outlier. Sometimes astroturfers just add lots of noise and confusion into online debates.

An obvious contender is vaccinations. This debate has always made me very nervous. Scaremongering puts public safety in danger and almost extinct diseases become a likely threat again. On the other hand, it could be that knowledge of individual danger from the vaccine itself is suppressed. Anecdotally people say it triggered their ME and some doctors seem to support this. Other people make this seem nutty and paranoid. Alternatively it was a trigger but these people would have got ill from many possible triggers because of a genetic difference. How do we really know?

Things to look out for to detect astroturfing online:

  1. “Ask your Doctor…”

  2. Inflammatory language, usually: quack, nutty, pseudo, lies, conspiracy (of course these can also be valid assessments!)

  3. Creating a fictitious myth so the reader thinks they’re clever not falling for the myth

  4. Attacking personalities or organisations rather than the issues

  5. Placing emphasis of scepticism on the questioners of authority

The MEcfs debate can be so heated that some of these red flags are recognisable, but it may not be astroturfing, it could be genuine, heartfelt opinion. If you criticise this post you might genuinely think it’s inadequate in some way or you may be paid to shut down this type of debate…

It would be egotistical to think that all criticism is fake! However, people who I consider fairly sensible and supportive of other people with ME do seem to get criticism which feels bizarre. Has anyone else had the experience of private messages which seem oddly negative? When I’ve had this occasionally I’ve put it down to the stresses of the illness mixed in with genuine disagreement.

Also, if there is astroturfing going on it is not at all clear which side it is on. The obvious assumption is Big Pharma trying to keep us swallowing those little SSRIs (and similar) and keeping us away from biomedical studies. However, presumably it will also be Big Pharma who supply non-psych medication. It seems like a win:win for them. I’m not convinced that this is happening in the UK. Here the push is on GET and CBT which doesn’t make big money but does build a few careers. However in terms of online noise, either the UK astroturfing is ineffectual, or it is actually in the other direction. It would be very difficult to be pro CBT or GET in our community and a lot of things get loudly dismissed as psychobabble. I don’t actually think this is astroturfing but it is an illustration of how you shouldn’t assume anything!

“hopefully this will make you a wiser consumer of information in an increasingly artificial, paid-for reality”.

Trust No one?

I don’t want to live without trust and I don’t want to make myself mentally unwell by fearing a paranoid reality. How do we know what we know from this place?

Trust Myself

In terms of moving forward in a practical way, I think the type of setup like Mendus is a good idea. We can hear that such-and-such supplement helped so-and-so and then we can go to Mendus and try it for ourselves, attempting to measure it in a Quantified Self manner rather than relying on data from other people with unknown biases. There will be flaws and biases in this approach too but at least we know that the results relate to our body and we haven’t been paid to say they’re wonderful.

Knowing Differently

In conclusion I want to add that I think as a group we have something to contribute to society from this experience of unknowing-knowing. We sit (or lie!) on the margins of society and gain a different perspective.



14 thoughts on “Unknowing-Knowing: Epistemological Crisis in ME

  1. Good insights. I’m a lot less trusting than I might have been if I’d never known anybody with ME.

    On a related note, Wikipedia appears to be aware of the problem on its own site and has blocked 381 sock-puppet accounts. Sadly, the ME page doesn’t appear to be among those investigated.

    Liked by 1 person

  2. Coincidentally this article appeared on this theme a few days after my post.
    You may be interested
    “On an emotional level, though, I think about a patient with CFS deciding about this. If you’re that person, what is your experience with the world? Your experience is that the scientific establishment has treated you badly. You’re sick and you don’t know why and you don’t know what to do about it. Having seen what the CDC has done with CFS, you don’t trust their advice or research. You’ve seen friends injured following the advice of respected doctors to do graded exercise therapy, and you’ve learned to keep yourself safe by relying extensively on the experiences of your fellow patients rather than purported experts. You seem to be more vulnerable than most people to all kinds of things—so something could be safe for 99.9 percent of people and not safe for you.”
    This is being discussed on phoenix rising http://forums.phoenixrising.me/index.php?threads/epistemically-challenged-my-thinking-about-science-has-been-affected-by-my-experience-with-cfs.39786/#post-638890


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  8. As an Incline Village survivor and original prototype for Holmes CFS, I became an inadvertent witness to what is undoubtedly the most outrageous “epic fail” in medical history.
    It started with the CDC choosing to disguise the 1985 Lake Tahoe outbreak in order to spare the tourist economy from ruin by hiding the epidemic behind a trivial name and vague definition, but the true malfeasance was carried on by the entire medical profession who bickered over their interpretations, revisions, subsequent “new improved CFS definitions”, all to the absolute exclusion of “going to the source” to find out why the original CFS definition was so confusing to them.

    100% EPIC FAIL

    Liked by 1 person

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