Sunday, January 29, 2012

More you than you

Are sufferers just like you the right ones to study? Not always.

I will tell you a story.


A story

You are at a concert.

All around you, everybody is collapsing. There is something in the ducts.


You're sick. Everybody is. Most have nausea and vomiting, but there are a few who have more symptoms.

They are closer to the vents, so you figure they got a higher dose.

Some who got a lower dose end up developing the other symptoms after a while.


Now you're all evacuated. The people in the neighborhood pulled together for the concert-goers; the milder sufferers did what they could.

The really sick people got carried a little farther away.


Status report:

Most of those who were near the vents are dead. Some mild sufferers are now severe. But you and most others are OK so far. You just have nausea and vomiting.


Now the medics arrive.

You say, "What is in the ducts? Diagnose us!"

They say, "We can't enter. What are your symptoms?"


What do you tell them?

  1. "Most of us have nausea and vomiting. You can study me."
  2. "Ask those people! The rest of us have nausea and vomiting. But study those people!"

Please decide before you continue.

Story, continued

Behind you, one person says to another, plaintively and desperately, "I hope they study nausea and vomiting. That's what most of us have."

You answer the second thing — "Study those people over there!"

You are glad the medic asked you.


The medic says, "Thanks for the information, but most of you have nausea and vomiting, so we will study you."

You say, "Don't you need to find out what's wrong?!"

The medic says, "You have nausea and vomiting. That's what's wrong."

You say, "But nausea and vomiting could mean anything. Pathogen? Toxin?"


The medic is silent.

You say, "You can rule things out! You might get a clue! Why wouldn't that help?"

The medic says, "We would have to walk over there."


Status report:

More mild sufferers are now severe. The medics don't notice them.


The medic gets out vials for the mild sufferers. He says it's for food poisoning.

You wonder what you were exposed to. You wonder if the injection is a reasonable thing to try.


As the medic busies himself, you gaze toward the severe sufferers. Corpses are being loaded onto trucks.

You wonder how long it will be until you get that sick.


Moral

OK, that is the story. Did you get the moral?

There are cases where you need severe sufferers to be studied.

Ours is such a case. See also Severity.

True for mild sufferers

Surprisingly, this is true no matter how mild your case is. Severe sufferers have the facts that help you.

They are more you than you.

True for severe sufferers

If you are a severe sufferer (see also {Severity}), you can stop thinking of yourself as an outlier, exception, fluke, edge case, uncharacteristic, or disregardable and unimportant minority.

There's more here, but I want to continue on my one point for this article.

Samuel's razor again

It so happens that if you only try to fit a tiny fraction of facts, thousands of useless hypotheses will seem to fit. By ignoring the breadth and depth of the disease, you fail.

By fitting only a few facts, your job is made easier if you are biased and impossible if you are not.


Remember {Samuel's razor}? Here it is again in the specific variant:

If you cannot explain the facts of late-stage disease, then you cannot explain the disease.

If your explanation does not fit the facts, then it fails and does not apply to even the mildest sufferer.

See the footnote there for deconfusion.

Severe sufferers have a large number of delicious facts that destroy and inspire hypotheses.


Everybody needs that. Yeah — even the mildest sufferer. Even all the more so because in many cases severe sufferers are the future them.

Currently-healthy people need it too.

Status report

Status report:

In this global pandemic, biomedical scientists almost never study bedridden and housebound sufferers.

They do not set out to study the ones who have a large superset of the facts required in ICC.

Those with the delicious facts are suffering and dying alone and out of sight.

What can scientists do?

Scientists travel distant reaches to scrape lichen, explore deep oceans, wade through leech-filled streams, drill cores in Antarctica, and perform experiments in microgravity.

They can visit bedridden and housebound sufferers.

My challenge

I challenge biomedical scientists to deliberately study bedridden and housebound sufferers, including those with many facts.

I invite mild sufferers to insist on it.

Samuel

21 comments :

  1. Excellent idea, Samuel. Thanks for articulating this.

    Is some particular organization presenting this demand to government health agencies?

    Could milder case patients be matched with the severely ill in a "buddy" system? The stronger person could write in behalf of the much more ill person, explaining that person's symptoms and situation and asking for research for the most severely ill?

    Best of luck to you.

    Merry Speece

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  2. I agree with you that it's nuts that they don't study the sickest patients, particularly the bedridden ones. Out of sight, out of mind - but that could be you or your kid one day,

    It is also nuts that all they ever look at is blood samples. I understand from the point of diagnosing the total population why that is easier, but when you are trying to figure out what is making people sick, why study only what is in the bloodstream?

    In the movie "And the band Played On," that's a biopsy of gland tissue that the French doctors put into their equipment to find the cause of AIDS; lymph nodes is where they found HIV.

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  3. Hi Mary, good point that they only study the easiest tissues most of the time.

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  4. Hi Samuel, this is an old complaint in advocacy circles, and I completely agree with it. However, I also understand why it is rare for researchers to do this. Its about funding. The research is so underfunded that to launch a study large enough to have some statistical significance they have to cut costs. So proper studies could be done, but its rare for anyone to have the funding. The PACE trial on the other hand could have got the funding, but for some reason they were unhappy to include house- and bed-bound patients in their study. I wonder why? ;-) Could they have been worried it would completely invalidate their hypotheses?

    Bye, Alex

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  5. Hi Alex,

    To me, there's more we can do to make things happen. Recruit more mild sufferers, recruit more scientists. IMO severity is the key.

    ===

    Dunno if this violates pancritical rationalism or not, but I do not consider the clown criminals to be scientists.

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  6. In at least one study I know of, but I suspect in many others, the investigators were unwilling to include more severe cases simply because those patients couldn't make it to their facility to be screened. In another study, the PI was unaware that there WERE such things as severe patients who couldn't get around on their own power. I'm guessing that's pretty common too. Even many so-called CFS specialists are actually ignorant of how severe the disease can get because they only go by the people who can actually make it to their offices. The low profile of severe patients in the community (a real gripe I have with most of our advocacy groups) further enables the medical research community's ignorance about them.

    Infectious disease specialists *do* tend to focus on the most severely affected in a disease population because they know that they are the most likely to express high levels of pathogens or pathology. But one of the problems that really plagues ME or CFS research is the lack of interest in or knowledge about the epidemics the led to the disease identification, thus skewing research models towards etiological explanations based on what are likely only peripheral/downstream symptoms.

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  7. It doesn't take much funding to drive to a severe sufferer on the way home from the lab and ask a few questions.

    Most scientists are completely unaware of the nature of the disease.

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  8. The issue with a researcher dropping in to a patient is problematic. One local study had a recruitment area several hundred miles across. So somebody would have to drive out of their way, at a cost of perhaps $50-200 unless they were volunteers (which is another way out of this mess). They have to do it once to meet ethics standards, then once for each time they visit. So if four times the cost could be $200-800 per patient. If the study has 100 severe patients, thats $20000-80000 dollars. Many smaller research studies have budgets not much bigger than that.

    It is further complicated if the person has to be transported for lab testing using fixed equipment (MRIs etc.). The cost of an ambulance both ways could be $1000 or more, per time. Add to that the problem that many severe patients face is that transport in an vehicle, even an ambulance, can endanger their health to a great extent, and may prove fatal in some cases.

    However, KDM did a study some years ago focussing on the very severe, and was able to show a correlation between blood markers and severity. Clearly this is what we need, its a question of how to make it happen.

    Bye, Alex

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  9. PS to my last post. I recall a case of a person in the UK who had severe ME. They applied for CBT/GET training - this was years ago and I don't recall the details. She talked to the specialist on the phone, who said come in and we can help you. She replied she can't travel, she can't walk, she had to crawl to the phone. The specialist went silent, then replied "I don't know what you have but its not CFS. You must be misdiagnosed."

    So ME is the same as CFS when it suits them, but is a misdiagnosis when it doesn't. There certainly is a lot of ignorance out there about ME severity and symptoms.

    I recall reading three morbidity rankings over the years. Where did CFS rank (ME was not used)? Most disabling, most disabling, third most disabling disease. This is ahead of MS, heart disease, AIDS, most cancers, kidney failure, and every other disease in a morbidity ranking.

    Most doctors and possibly most researchers are not aware of the severity, that I also agree with. I wonder if this affects their application for grants? Maybe if they said they were researching the most severe and need substantial transport costs to be met they could go for larger grants?

    Bye, Alex

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  10. What I'm saying is far simpler and far earlier in scientific discovery.

    Most scientists -- real ones -- are unaware of the nature of the disease.

    You don't need a formal study to start at the beginning. By knowing the facts that any good advocate knows, you immediately eliminate hypotheses that make no sense.

    This actually saves funding more than it costs it.

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  11. Hi D.,

    "Infectious disease specialists *do* tend to focus on the most severely affected in a disease population"

    How do we get them interested?

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  12. I have no idea how to make scientists do what I want them to do.

    But ME/CFS advocacy organizations should push the story of the severely ill.

    I would also like told the story that in some families more than one family member is ill with ME/CFS.

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  13. Hi Samuel,
    Love your piece! I agree with you completely. The plight of severely ill patients should be put in the forefront. I think one of the problems is we need more research dollars, and in order go get those $$ ME/CFS needs more recognition and legitimacy. How about we look for a celebrity to champion our cause, like Liz Taylor did for AIDS and Michael J. Fox is doing for Parkinson's. Would Cher or LeAnn Rhimes, who both have ME/CFS, be interested? It doesn't even have to be someone with ME/CFS- as long as they're famous. Anyone have any ideas on how to persuade a celebrity to take on such a cause?
    Best,
    Fatima

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  14. Hi Alex,

    Yes, the morbidity results I have seen are extraordinary.

    It would be good to see some similar studies with ICC.

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  15. Hi Fatima,

    Yes, I think a celebrity could help, if he or she is educated on the topic. Severity is the number one thing to teach IMO, for the reasons in {Severity}.

    How indeed? I suppose if nobody knows one, asking is better than not asking.

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  16. We need to be *really* careful who we're apologists for. All comments like 'Research is too expensive" do is further their no-action agenda. If there ARE millions of us in the world who, one day fine, the next- or shortly thereafter- it appears we're done for like an overcooked marshmallow, the governmental blind eye is willful. Like the author of this great blog pointed out, scientists/researchers travel to far corners of the earth. They can sure as F$)& make it to MY house, and yours, yours, and you, too, laying over there. I am on the borderline between being able to get in a cab versus inability to shower, dress, use my legs to walk around the apt. with a brain that still thinks to think, "Do I have notebook? check Water? check Cell phone? check Have I left out enough food for the cat in case they admit me? check" before leaving the house for a medical appt. that at one time, & recently, would have been just another blip in my day, just one stop as I pedalled across town on my bike I rode 24/7/365, and despite the miles, would have awakened energized the next day, ready to go right back out. Pardon this lengthy post, but if anyone out there who has this affliction even at ALL considers 20k or 100k to be a prohibitive obstacle to keep a mill or mills of humanity alive a bit longer, ease suffering and lower likelihood M.E. goes to the generation after us, on down the line, that's drastically naive. 20k is chump change; I should know as even *I* have received that exact amount via an art fellowship from 'the gumint'. Never mind rehashing funding priorities, the old It Will Be A Great Day When The Schools Will Have All The Money They Need And The Air Force Has To Hold A Bake Sale & other sane observations. We as humans were the ones who created the very cash system we live by; therefore, we can make that system work in any way we choose. We just have to choose it. Yes, it's about Severity. It's about the doctor's husband or child getting M.E. It's most about the 'bottom line', in my opinion. We can't leave our houses? Too bad from their standpoint, because we're a subset they can't make money off of. I have no idea how much longer I have to live because I already feel dead. As long as I have a pulse, though, I will keep making my voice heard & pathetic thin frame present at the local yokel hospital ER, who referred me to a physician within said hospital who oversees his own dept. and who flatout denied M.E. exists then said, uh, psych consult instead, & became, shall we call it *nicer* when I pointed at cell & said I was recording this appt., and on the way out thought to ask receptionist "how many people with CFS come here for treatment" of which her unguarded answer was defacto genuine, oh, plenty, & after my immediate return to ER, the doctor on duty said it's def. viral, you must go to Infectious Disease folks upstairs and you just know how that’ll play out- getting shovelled to another dept. I'm up to over 10 doctors in 6 mo., and I don't know about you all, or what keeps you going, but thank god there's blogs like this and our supporting each other from the other side of our own respective square glow screens. But as far as nodding for them our shrunken heads up toward the sky then down to the ground- ground that likely will hold my body sooner rather than later- we don’t need to be tools with shovels digging our own final resting places whilst agreeing our lives are not worth the trees the bills get printed off of. Be well. certainlights

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  17. Hi certainlights,

    I agree. We are aiming low by orders of magnitude.

    It's time we come into our own.

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  18. Hi Merry,

    Indeed, advocacy organizations should shout those two things from the rooftops.

    The fact that they do not, in my view, says a lot about those organizations.

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  19. http://www.meaction.net/wp-content/uploads/2015/08/ResponseToNIHRejectionsRonDavis.pdf

    There are efforts to study the sickest among us.

    http://www.meassociation.org.uk/2015/08/uk-mecfs-biobank-collection-of-blood-samples-to-be-stepped-up-21-august-2015/

    -Jaime

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  20. Hi Jaime,

    Although I don't know too many details about the study yet, I am particularly interested in the Ron Davis study, perhaps more than any so far on the disease. This is the type of thing that can crack the whole case open for everybody.

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