Who said: don't bother testing patients?

@DokaGirl, good list! Indeed it shows how the stigma in ME is kept.

How did a stigma develop in the first place?

For instance, why did the CDC "ambassadors" didn't take Lake Tahoe seriously?
Sadly, we don't know more about the Royal Free Outbreak - or am I mixing it? The case where the staff sued the manufacturer of a polio vaccine and there was an arrangement?

 

Also ME is a life destroying chronic condition where the endpoint is being completely bedridden, unable to communicate, be touched, endure light and in so much constant pain that suicide is a rational choice. It is terrifying - and it strikes without warning and could happen to anyone adult or child.

The only way to cope is to pretend that it is not a disease but a psychological problem of weak, lazy, neurotic people so it will never happen to you or your family.

 

Inara, the Royal Free outbreak came just as polio was being tamed. It is hard for us to appreciate the terror of polio. I have memories of standing in the snow in an enormous queue waiting for vaccine when there was an outbreak before I started school.

I suspect that no one wanted another enteroviral disease that came in epidemics and could strike anyone. Much easier to write it off as mass hysteria.

Tahoe was a rich person's tourist town. The business community did not want people to stop coming because of an unknown infection so they were keen to play it down. I remember reading that the town turned against the patients.

 

That makes sense, @Mithriel.

 

Thank you @Inara!

I agree with @Mithriel, that one reason was bad public relations for a tourist spot.

And, I read that US authorities, did not want to deal with another large health crisis, as they were already reluctantly dealing with the HIV/AIDS crisis. I don't
know to what extent they had taken on
working with the AIDS crisis, when ME came along. The Lake Tahoe epidemic started in 1984.

In Hillary Johnson's book Osler's Web,
page 217 -218 regarding the first CDC definition of cfs, an infectious disease specialist's concern regarding broad dissemination of this criteria was noted. He said, " the field could change from an epidemiological investigation into a health insurance boondoggle/nightmare for various interested parties." In a second communication, this physician suggested "a disclaimer in the definition alerting doctors that disability claims could not be based on the government's diagnostic criteria. ' It might discourage chronic reimbursements for the diagnosis - (i.e. long-term disability) - until more is known...'"

On pages 654 - 655, Hillary Johnson wrote that some people following this crisis thought that allowing government disability payments for CFS would bankrupt the US Social Security fund. "This might occur not only because the pool of disabled sufferer's was so huge but also because CFS was a chronic illness rather than a fatal one; statistically, one third of the 75 percent of SSA disability recipients who were physically impaired died within five years or less, thus ending the payout."

Two major groups with vested interests in keeping ME stigmatized, governments, and the disability insurance industry.

 

These are really good points, @DokaGirl. (I read Osler's Web, but I forgot much of it. ) Yes.

 

Thanks, @Inara. Yes, memory problems with ME. A documented problem for pwME, proven on testing, included in the CCC, but also ignored by BPSers and government authorities.

 

Testing requests from those who are not pwME may also be refused. Apparently some, or maybe many in the medical field believe that delving into definitive testing may make any patient focus too heavily on their health problem. This is of course problematic if deeper testing is needed. Say like....for us! Or people with cancer, or MS, or a myriad of other diseases.

It would be interesting to know how long it takes for people with various health conditions to get a proper diagnosis.

 

What I very much dislike in all of this (i.e. refusal of tests due to iatrogenic harm, exact instructions for doctors how to behave, concept of "unhelfpful beliefs" etc.) is the patronising tone. Szasz called it the "therapeutic state" - where others, "experts", know better than yourself what's best for you, and thus, what is best for society. If someone needs financial aid, the freedom of choice is denied: the individual right of autonomy doesn't come before society's well-being, and that is to limit financial "burden".

 

Thank you @Inara for noting Szasz. I haven't read his work, but hope to. Many years ago I read related works.

From someone I know who worked in the social services field with cognitively challenged people: a little extra money in their pocket, can help much more than more anti-psychotics or counselling.

 

Szasz didn't always say and write good things. But his earlier works are good I think.

 

Sure.

I wonder if I can find the original language, I wrote this up in response to someone at some point...

aaah I can't ok

I'll try and be quick. In no particular order:

1. The relapsing-remitting nature of the illness. Seeing someone unable to move one day and walking normally the next is really hard for people to 'grok'. Just listen to all the stories online about people using their handicapped parking placards and being directly challenged if they climb out of their car on their own two legs. We are all supposed to 'perform disability' in public -- consistently -- to be taken seriously.
2. You don't look sick. Can't you at least generate a suppurating wound? Some bleeding from the eyes?
   If you lose weight because you can't keep anything down, especially as a woman, you're often told you've never looked better.
3. Mostly women get ME. Misogyny is a thing. We know that there are studies that say women's pain is disbelieved, and women are considered unreliable narrators of their own experience. I can come up with no better evidence that this is a Huge Deal than the very fact that many people insist we shouldn't even talk about this part because mentioning more women get the disease than men triggers automatic disbelief.
4. We won't just die or get better. We (as a culture) have a problem understanding lasting illness. Sick people are supposed to perish tragically or be an inspiring story that ends in perfect health. Just look at all the journalists who can't seem to resist ending their story about ME with a strangely uplifting and incorrect assessment that the patient is all better now. And people who deal with chronically ill people consistently experience 'compassion fatigue': empathy can only last so long before it runs out. It's very rewarding, psychologically speaking, to tune out the very concept of endless suffering.
   Added to this is the 'just world' theory that people thrust out in front of them to protect themselves from psychological distress. If people with serious illnesses have done something wrong, this means that they -- a right-thinking person -- are protected from harm so long as they are emotionally strong, eat right, and exercise.
   Would that this were true!
5. We express common symptoms. Dizziness. Headache. Food intolerance. Fatigue. It's not a wonder that people so often respond with "oh, I went on a really exhausting bender last Saturday, I know just how you feel!" How to explain that yes, it's like that, sort of, times eleven? Now we sound like we're 'merely experiencing ordinary life' as Wallitt put it, and not tough enough to take it.
   There's so much emphasis on PEM in our community and in our diagnostic criteria because it's the thing, the thing that is not identical to symptoms healthy people experience. But imagine as an early patient you don't have that kind of language to describe it all (because you don't). "I get exhausted and tingly and I can't think..." sounds like overdoing it, especially if the doc considers the speaker less than wholly credible (see #3). Maybe the patient needs iron tablets, or valium, or to put on a little lipgloss. Who can say?
   
6. There is no single diagnostic test. If NKC function falls in the forest, does it make a sound? ME isn't the only illness without a consistent biomarker, but this does add to stigma and disbelief.
7. There is no treatment and no cure. People are fond of illnesses with pat and easy explanation. As a culture, we reject complexity.
8. A myriad of triggering factors. The immune system responds in near-identical ways to immunological trauma: sepsis, burns, infection... I don't feel this is common knowledge even in the medical profession except maybe in nutrition (notable metabolic changes) or emergency medicine (where you have to know or lose the patient), much less the general public. From their perspective, and from the perspective of doctors who've been listening with half an ear, it was EBV, and then it was XMRV, and now it's anything/everything.
9. It's multi-system & potentially neurological. In short, the brain is too easily swapped for 'the mind'. And saying the symptoms are everywhere in every system threatens to overwhelm. At its heart, this is also really a failure of science literacy and a rejection of the complex as inherently impossible.
10. Bias and infighting lead to dogma. pwME are viewed as reactive. Within the scientific community and medical community itself, despite the notable lack of big studies and scientific consensus, researchers double down on theories that have almost exactly as much (or as little) evidence as anyone else's... and often their papers read as a vociferous argument instead of a presentation of the facts. Then there's the fact that everyone in science and medicine knows each other, creating a potential minefield of actions and interactions.
11. People who ain't great at science, sciencing. You remember how it goes: we've all been through that initial phase of illness where you are sure you've found it, the problem, because fact X connects to fact Y and clearly therefore Z and you have a theory, awesome!
    The problem happens if you stop there. If you decide you've been successful at Solving ME. You have to keep reading long enough to find another theory that really truly seems to fit exactly as well, and then ponder how that could logically be.
    Either your theories are both true and connect to one another... or you have actually discovered that everything within a biological system will connect to everything else.
    Surprise, surprise... human beings are, in fact, an organism.
    So. If you look for a connection between ANY two loci in the human body and its function? You'll find it.
    Be aware I'm not mocking anyone here so much as myself. I went through this process like, seven or eight times, maybe, before I got the picture. Now I'm much more cautious in my thinking.
    But it seems a lot of people stop at Theory 1, and are satisfied that they've got the idea and everyone else are fools. I said earlier in this thread that when someone's actions appear nonsensical, perhaps you're aiming for different goals. But the other possibility, besides stupidity or incompetence, is that they know something you don't know. Let's not forget that one.
    [Edit: I'm using patients' theorizing as a particular example here, but by no means is this just us. It's the scientists and clinicians trying to solve the disease as well.]
12. Aaaand money. So, you have a chronic illness. Wait, forever? Does that mean you'll need help... forever?
    We understand you've been paying your government for ages, and/or your insurance in the case of just such an eventuality.
    But here's the thing.
    Your disease isn't real.
    How do we know?
    It's because it's forever.
    That sounds like it would cost us a lot of money. If you live.
    And it sounds like you probably will.
    You know what would cost less money?
    Finding some researchers w/poor critical thinking skills who have pointed out 1-10 as reasons why this disease is psychosomatic. And who fulfill criteria 11.
    And funding their research.
    And knighting one!
13. Some very, very bad decisions from gov't. They missed the opportunity to do the right thing at Lake Tahoe, and it doomed us to decades of uphill battles. Without them, Wessley would never have gotten a foothold via his Fukuda work.
    I'd like to see what became of us in that alternate universe where the Lake Tahoe outbreak was treated seriously.
    But -- BUT.
    They were only allowed to get away with this because of numbers 1-12.
    
14. The triumph of cynicism
    I'd like to specifically whack McEvedy & Beard across their respective faces -- less well-known here because they produced exactly one paper -- but it was disastrous for us.
    That would be the one that said that the Royal Free Hospital outbreak was hysteria.
    There's a general idea in science and medicine that cynicism is clever in and of itself. Skepticism is what shows intelligence and prudence -- that is, the unwillingness to automatically believe or disbelieve anything but to first test one's assumptions. Automatically dismissive behavior is the ignorant person's version of cleverness, and it's so beloved because it requires very little in the way of rational thought to arrive at "actually the science is a LIE, LOLz".
    Humans are also quite fond of feeling like others have fallen for a logical trap or scam, and they (and a select group of their friends) are the only ones clever enough to be 'in the know'.
    Ironically, it is precisely the same impulse that makes people fall for conspiracy theories.

 

This is great, @JaimeS !

- "add a little lipgloss"; the 1950s cure-all; or dye your hair - yonks ago, I read that if women incarcerated in psych wards take an interest in putting on makeup, they are considered on their way to improvement, or are improved.

- "we express common symptoms" - people, even health care professionals seem to expect very dramatic symptoms, and incontrovertible proof of disability, but the body can only react so many ways. There is a limited repertoire.

- relapsing/remitting nature - I rest lots before going out and about, otherwise I may be useless while out there, and need to go home forthwith; so while yes, I most definitely agree ME is relapsing and remitting, I think many with ME work very hard to look normal. To prep for those times when we travel in the non-ME world. It's very difficult to navigate a "normal" few hours out and about. We may look fine on the surface, but are paddling like mad underneath.

- I want to say more, but I'm out of steam.

Thanks very much for al these points!

 

That's great indeed, @JaimeS! I take a bow. Thank you.

Maybe you should consider publishing it somewhere, even if it's "only" online so that you can be quoted.

 

In fact, when I started looking at biochemistry - without really understanding it, like you can understand maths, just acknowledging it's really complex and utterly fascinating - indeed, everything is connected. It makes it sooo complex, and I wonder if ME (or other diseases) is just too complex for the human brain, just like the universe and quantum mechanics.
So I do wonder if ME will be understood...

Edit: I think what is needed are "brain networks" - take maths as an illustration. A lot of really intelligent people, many of them probably geniuses, worked on building a huge theoretical complex over several hundred years. I doubt one human brain alone could have done that.

 

Point # 11. Yes - ME is this, and then....no, it's actually that, and then, no again - it's really something else. I went through this for years back in the 1990s. Since my doctor couldn't help, I went on the hunt, and followed many wrong paths. It was, and still is a learning experience. Not a fun one though!

 

Oh god, that reminds me of this nightmare-fuel photo:



Women in the hospital encouraged to wear 'smiling masks' to improve their condition [edit: or something. See subsequent posts about potential meanings of the photo.]

 

But as you say.

It's an incredibly enlightening and humbling experience. Some of those theories could very well be true. And the process itself really sharpens the mind.

It's people who cease progress down the road early on in the journey who grow arrogant and think they are the only ones who really 'get it'.

 

I've mentioned this a lot, and can't believe it wasn't on my original list; gonna add it if that's ok

 

Whoa.