New York Times Op-Ed: A Disease Doctors Refuse to See/CFS needs effective treatments, J Rehmeyer

[Snowdrop]

I get a sense that that sort of medical professional enjoys the power involved in denying patients care, and perhaps a sense of power and control is what attracted them to the medical profession in the first place.

So they see us as naughty children that need severe disciplining. We're questioning the competence of the parent surrogate and they feel threatened. There's a psych paper in that.

 

[Snow Leopard]

This one particulary got my goat:

David Devonis: "If a person is employed (and writing for the NYT), then what boots if he or she is tired all the time? Lots of people in the world go through lots worse to live. US culture has no patience with the sick, and especially with those claiming to be sick without hard evidence. All the hard evidence in this case points to one conclusion: this is a person who is working, productive, and feels lousy. No diagnosis is necessary for such a ubiquitous condition. If we are really looking for the roots of this syndrome, we have to look at psychological issues--especially why people differ in their ability to 'play through pain.' Athletes would be a good population to study in this regard."

Agreed.

I've always had a much greater mental endurance than my peers. I remember seeing advertisements at a bike store for very long (300+ km) bicycle rides and I genuinely believed that was something I'd enjoy doing. Sadly I became ill before I had a chance to try it.

Before I became ill (I became ill when I was 15), I believed I was genetically gifted in that regard, because my father was a marathon runner (now ultramarathoner).

 

[Antares in NYC]

Agreed.

I've always had a much greater mental endurance than my peers. I remember seeing advertisements at a bike store for very long (300+ km) bicycle rides and I genuinely believed that was something I'd enjoy doing. Sadly I became ill before I had a chance to try it.

Before I became I'll (I became ill when I was 15), I believed I was genetically gifted in that regard, because my father was a marathon runner (now ultramarathoner).

Same here: before I fell ill, I was an avid mountain and rock climber, from high school all the way to the my late twenties, having climbed many ranges in Europe and Eastern US.
I was also a competitive swimmer (freeslyle stroke) from high school through college.

Now a single flight of stairs leaves me panting and trembling.

In the cognitive area I was quite successful: well I have three college degrees (B.A., M.A, M.S) , and like Jen Brea, I was in the process of selecting schools for a PhD... ME/CFS hit me right at that process, and never even had a chance to start the PhD application program, spending the best part of the first two years of my illness crashing and bed-ridden.

Now I don't have a functioning memory, and brain-fog thick enough to hide an iceberg.

But I should just stop complaining and "play through the pain", right? Note: I have been "playing through the pain" for 16 years now.

Like I said before, I would love to see all these trolls and vitriolic know-it-alls spend one month, just one month in our shoes. Then we would talk about whining.

 

[SOC]

Like I said before, I would love to see all these trolls and vitriolic know-it-alls spend one month, just one month in our shoes. Then we would talk about whining.

 

[Purple]

Like I said before, I would love to see all these trolls and vitriolic know-it-alls spend one month, just one month in our shoes. Then we would talk about whining.

Some would be calling an ambulance and assembling the family for a last goodbye as they would think they must be dying when feeling so incredibly ill with their body failing so catastrophically.

For us, it's just Thursday.

 

[Sidereal]

Some would be calling an ambulance and assembling the family for a last goodbye as they would think they must be dying when feeling so incredibly ill with their body failing so catastrophically.

For us, it's just Thursday.

So true. I watch normal people - the very hypocrites who think I'm just "overly focused on normal bodily sensations" - how totally freaked out they get when they get a symptom that could potentially be dangerous like chest pain. I'm so used to having such symptoms all the time that they no longer make me bat an eyelid whereas others who dare to judge and disbelieve me are running to the doctor immediately when they feel something's off.

 

[Antares in NYC]

Another thing I would say to all those nasty folks telling us we are "lazy whiners" that are "faking it", is the following conundrum:

If you were in horrible accident, may that never ever happen, and you needed a major blood transfusion... would you take a pint of blood from me or any of us CFS patients?

No? I thought so...

Which brings me to another interesting observation: the NHS and medical authorities in the UK deny the existence of ME/CFS as anything else but a psychological issue. Yet at the same time they banned ME/CFS patients from donating blood. So.. WHAT IS IT?

I mean, we may be very sick, but we didn't fall off a tree yesterday, ok?

 

[MeSci]

So true. I watch normal people - the very hypocrites who think I'm just "overly focused on normal bodily sensations" - how totally freaked out they get when they get a symptom that could potentially be dangerous like chest pain. I'm so used to having such symptoms all the time that they no longer make me bat an eyelid whereas others who dare to judge and disbelieve me are running to the doctor immediately when they feel something's off.

I didn't go to the doctor's for things like a chesty cough even before ME. I treated it with herb tea. This was the same condition that had previously been diagnosed as bronchitis, that would send most people straight to the doc, but having had it a few times I had found that my herb tea worked better than anything the doc prescribed. When I broke my wrist, after getting ME, I didn't see a doc for 3 days, when I was finally persuaded by people on a forum. I had thought it was just a sprain and carried on my plant nursery work, using teeth and legs instead of the injured wrist for the packaging work.

When I sprained an ankle, I didn't go to the doc - I researched it on the net, graded the sprain (I think it was a two) and followed the advice on there as far as I could under the circumstances. It worked well.

I have frequently found that my own treatments work better than those provided by doctors.

I too was very active before becoming ill, and my levels of endurance pretty good. I represented my school at sports, climbed trees and ran for fun, took quite a few risks in early adulthood and basically worked hard and played hard. A few years before getting ill I was working full-time and then filling my car with logs collected from a forestry plantation at the weekend, bringing them home, unloading them again and cutting them up for firewood.

Oh, and I did well academically, including 2 science degrees.

What a pathetic weakling and coward I am.

 

[MeSci]

I would love to see all these trolls and vitriolic know-it-alls spend one month, just one month in our shoes. Then we would talk about whining.

Would they even manage a week?

 

[ahimsa]

Regarding doctors who won't listen to patients (e.g, DI and vasopression issues) I'll chime in with another story.

A month or so before my tilt table test, I saw a rheumatologist to rule out Fibromyalgia. I was pretty sure I did not have the right symptoms for that but my PCP suggested that I see him.

I had some advance information on Dr. Rowe's study (not yet published) linking ME/CFS to Orthostatic Intolerance. I thought that this Johns Hopkins study might apply to me. So I mentioned it to him and along with a copy of the information that I had with me. His response was something like, "No, your blood pressure is fine."

A month or so later (Jan 1995) I passed out on the tilt table test with an obvious abnormal result.

And now, 20 years later, OI is part of the diagnostic criteria for SEID.

(I should note that for all I know patients with OI are only a subset of ME/CFS--who knows? But it is not something to ignore, or something that is very rare, if it was part of the IOM report.)

Doctors should listen to patients. I realize that patients are not always right. I often make mistakes! But that does not mean doctors should ignore patients.

I would have respected him if he had disagreed with me after looking at the Johns Hopkins study. But he would not even look at it. He just brushed it aside.

To bring this back on-topic, it's no mystery to us why the title of the NY Times article is, "A Disease Doctors Refuse to SEE."

 

[SOC]

Would they even manage a week?

Not likely, but would you want to let them off easy with only a couple of days?

 

[MeSci]

Not likely, but would you want to let them off easy with only a couple of days?

What do you think?