They be watchin us. . .

[Levi]

..........

 

[cold_taste_of_tears]

I like your thoughts, both points very interesting.

1) If patients are XMRV+ the denialists can go stick their head in a bucket it won't matter.

2) If patients (with obvious neuro immune disease/disability) are not XMRV+
then I will eat my hat on youtube.

Deal?


Professor Peter White (CFS psychiatrist), this month says

1) Belonging to a self help group delays recovery
2) Patients being given financial support (to survive) welfare payments delays recovery.

If this is these people's mindset, and they warn us XMRV is not going to be anything, who is to be trusted?

The WPI who claim people with neuro immune disease using Canadian criteria tested positive between 65%, 85% 95% for XMRV. Or someone who even denies us the abilty to get support from fellow sufferers that we really do need?

I've thought this through a lot, there is no way that Dr Judy + Dr Peterson, and all there allies are going to end up with egg on their face regarding people with Canadian criteria ME/CFS - neuro immune disease.

They must have made sure they purchased brand new uncontaminated equipment first before announcing this.

I would bet 80/20, that this contamination theory is put out by Psychiatrists, because so far - all they have given is a soothing hand of death.
And or by patients themselves. We are so used to a dead end, we become expert in forensic detection and what/if/why/when - including me.

I thought what you did and still agree there is a chance (for sure), but I'll put my faith in these WPI folk, for the first time ever.

That hat will sure taste mighty fine!!

 

[anne]

2) Patients being given financial support (to survive) welfare payments delays recovery.

My god. It's just....deranged.

 

[Marylib]

Doctors taking bets, laying odds

This is disgusting.

 

[starryeyes]

It's real. This is how it is out there. We are the maligned.

 

[Dainty]

The nice thing about science is that eventually the truth will come out, either way. I don't much care if they malign us while they're at it, so long as they are in fact willing to treat us for whatever problems known science determines we have when the time comes. Until then, we continue on as before--they have their world, we have ours, and someday everyone will know who's right.

 

[Katie]

We had a huge amount of guests and people signing up yesterday, most there has been on PR, I thought that somewhere popular might have put a link to this site. Maybe yesterday doctors were looking at this site as well as people who've been googling XMRV?


I don't really care if they want to take bets, some people are close enough yet removed enough to do that. For me, it's a little close to home but they aren't in my hole ridden boat, they are in the life boat with no idea where we are.


There's a mixed bag of comments, I laughed a little when one guy talked about somatization disorders being a diagnosis of exclusion but said 'good news it's not cancer' - yeah, might be a retrovirus instead, huzzah. It really does highlight that CFS is a wastebasket diagnosis. It's impossible to argue that we have all got a physiological disorder when we don't. I've known people with an ME diagnosis who were suffering with mental problems and be treated and get better that way, I've known people be rediagnosed with lupus and MS, we're a hodge podge of people who have been bunged in the basket because the medical institution ran out of ideas. There also is this underlying attitude that 'if it isn't anything we already know, then it's psychological' I just don't understand why it's not considered that often that there might be something out there that is not yet known about.


Never mind, replication studies are under way, hopefully enough studies using good criteria will out weigh the ones just rifling through the waste basket indiscriminately and grabbing a few off the depression shelves too. I do worry though. Science may have this air of infallibility but humans certainly do not.

 

[blackbird]

I think I might have WBS.





(Waste Basket Syndrome)

 

[Jimk]

Only three years?

Would have been nice to know that "most cases resolve" in three years... 25+ years ago when I got this damned thing. I probably would have been able to auto-suggest myself into a rapid cure, since we know it's all psychological...

Oh, yeah, the confusion between CFS and depression was actually cleared up in a couple of studies. Guess that dog won't hunt.

 

[Esther12]

My god. It's just....deranged.

Nah.

Disability benefits seem to make recovery from a wide range of medical problems less likely.

With CFS, there are already such prejudices about the illness that people would be more likely to use a claim like this to deny disability benefits, but I don't see why this affect would only be measurable in (for example) spinal injury and not CFS. Especially given the way CFS is normally diagnosed.

Would have been nice to know that "most cases resolve" in three years... 25+ years ago when I got this damned thing. I probably would have been able to auto-suggest myself into a rapid cure, since we know it's all psychological...

Oh, yeah, the confusion between CFS and depression was actually cleared up in a couple of studies. Guess that dog won't hunt.

The SBM article is just a disgrace. So many controversial and un-cited claims presented as facts or medical consensus. The CDC claim is just about the only one he makes where he bothers to mention the source, and it's completely contradicted when you look back to it.

The CDC website says:

Recovery from CFS

•CFS affects each individual differently. Some people with CFS remain homebound and others improve to the point that they can resume work and other activities, even though they continue to experience symptoms.
•Recovery rates for CFS are unclear. Improvement rates varied from 8% to 63% in a 2005 review of published studies, with a median of 40% of patients improving during follow-up. However, full recovery from CFS may be rare, with an average of only 5% to 10% sustaining total remission.


The fact that a quack like doctor Sampson is allowed to present himself as a representative of 'science based medicine' on CFS is such a hardship for CFS patients, and probably the primary reason CFS patients are reduced to trying so many unproven alternative therapies. When 'science' seems so uninterested in the evidence, why not go for aura healing? It's disgusting.

 

[Min]

No deaths from ME/CFS & its complications?

They include Sophie Mirza

Casey Fero

Alison Hunter

and many more, here:

http://www.blueribboncampaignforme.org/ME_CFS_Memorial.html

We know that untreated ME.CFS leads to heart disease and cancer, and that many deaths are the result of suicide because the sufferer could not live with this horrible illness accompanied by the contempt and disbelief of the medical profession

 

[oerganix]

support delays recovery?!?

" Patients being given financial support (to survive) welfare payments delays recovery."

My god. It's just....deranged.

Right, I just love living on my $8400/year disability check, as opposed to the the $35,000/yr I was making in 1988, the last year I was able to work. And those COLA increases of $4-5/mo (zero coming next year) really help me keep up with the rising cost of living. And I just love being denied access to medical care because many doctors don't take Medicare/Medicaid and being denied certain medications and tests because Medicare D doesn't want to pay for them.

Yeah, I'm just lazy. I lost my beautiful Victorian 100 year old house in San Jose CA, so that I could live in government housing, which requires paying 30% of your income for the privilege of living in a horrible environment.

Yeah, I'm just lazy. I became an entrepreneur at age 10 (buying baby chicks for a penny each, raising them, selling them for $1 live or $1.50 butchered), bought a sewing machine with my profits and sewed or bought all my own clothes since then. Made enough money to buy my own first car at 17.

Yeah, I'm just lazy. I worked my way through college and got accepted at 3 law schools.

Yeah, I'm just lazy. Nobody in my family has ever been on public assistance and some of them are so ashamed of me that my mother asked me to go to another town to use food stamps, so the neighbors wouldn't see. So I guess any support from them would have delayed my recovery - which hasn't happened yet, after 28 years of illness. The delay must have been because I got "support" from SSDI after the first 7 years of illness.

None so blind as he who WILL not see.

 

[CBS]

When 'science' seems so uninterested in the evidence, why not go for aura healing? It's disgusting.

I knew there was some quack cure I hadn't tried yet. And to think I was so close to wasting time on CBT!

 

[spit]

I wish any of that surprised me terribly. One of the first things I started doing when the doctors couldn't figure out any obvious sort of diagnosis was start reading some of the textbooks designed for their use, and I have to say that some of the overall attitude about patients and the "things to watch for" in our attitudes and emotional presentation is both crap and dangerous crap at that.

"La belle indifference"? For them, it's a sign of conversion disorder (the modern day term for hysteria). For me, being cold and probably apparently unconcerned about my health is a protection mechanism that comes from feeling like shit for years and being tired of people reacting to my fear and pain as though I'm simply whining. In the doctor's office especially, I put on my game face. A good doctor understands that, but I've not always had a good doctor to see.

I'm fine with the fact that the science is at very, very early stages wrt XMRV, and I'm fine with doctors being skeptical -- that's healthy. It's the utter lack of understanding of patients as whole people that really bugs me.

And I'll always be particularly bothered by the need many doctors feel to be really, really skeptical of everything that comes out of a patient's mouth, but not to be skeptical of whole realms of "pathology" and "treatment" that are little more than guesses coming out of a long history of completely untestable psychological theories.

 

[gracenote]

You have not read the paper?

" Patients being given financial support (to survive) welfare payments delays recovery."

Right, I just love living on my $8400/year disability check, as opposed to the the $35,000/yr I was making in 1988, the last year I was able to work. And those COLA increases of $4-5/mo (zero coming next year) really help me keep up with the rising cost of living. And I just love being denied access to medical care because many doctors don't take Medicare/Medicaid and being denied certain medications and tests because Medicare D doesn't want to pay for them.

Yeah, I'm just lazy. I lost my beautiful Victorian 100 year old house in San Jose CA, so that I could live in government housing, which requires paying 30% of your income for the privilege of living in a horrible environment.

Yeah, I'm just lazy. I became an entrepreneur at age 10 (buying baby chicks for a penny each, raising them, selling them for $1 live or $1.50 butchered), bought a sewing machine with my profits and sewed or bought all my own clothes since then. Made enough money to buy my own first car at 17.

Yeah, I'm just lazy. I worked my way through college and got accepted at 3 law schools.

Yeah, I'm just lazy. Nobody in my family has ever been on public assistance and some of them are so ashamed of me that my mother asked me to go to another town to use food stamps, so the neighbors wouldn't see. So I guess any support from them would have delayed my recovery - which hasn't happened yet, after 28 years of illness. The delay must have been because I got "support" from SSDI after the first 7 years of illness.

None so blind as he who WILL not see.

I think Oerganix, you get to be one of the exceptions. It's the rest of us who are "borderlines."

According to Mark Crislipon (response no. 1)

There has always been the subset who were high functioning, had an acute febrile illness, and never recovered. They give a different pattern than the borderlines or the somatiform illness...

My favorite response is from lab001 (response no. 18)

Your article must be some kind of joke, surely? You have not read the paper. You have not read the paper? You write a lengthy piece rubbishing a paper published in “Science” and you haven’t read it? And the name of this website is….?

And you make some inference with regard to the fact that the study wouldn’t have taken place without financial assistance from the mother of a woman who has been ill for many years. Are you suggesting this woman would be glad to have fake results of some kind in order to “help” her daughter? Are you somehow inferring that Judy Mikovits – 20 years’ experience of HIV – and Robert Silverman – even longer experience in cancer research – have somehow manufactured data and fooled that slipshod, second-rate journal “Science”? . . .

It’s a cosmic joke isn’t it? These poor patients – the ones with a well-defined chronic disease and not the depressives given a “CFS” tag by lazy or incompetent physicians – sit in a consulting room with people brimming with the type of attitiude you display. Which one is deluded?
I suggest you rename your site “ArchaicBeliefsSpoutedWithoutReadingNewEvidenceBasedMedicine”.

 

[SDD1244]

You know what cracks me up ? That there hasn't been one questionable illness that wasn't proven to be real. Some of these physicians have questioned whether MS and post-polio syndrome were real and once again... they were wrong. When are they finally going to get it ??

 

[MEKoan]

"La belle indifference"? For them, it's a sign of conversion disorder (the modern day term for hysteria).

If we are upset, we are hysterical; if we are not upset, we are hysterical.

It is quite a conundrum.

There is no affect one can adopt in this situation which will not appear to be hysterical.

I have been at this for 30 years. Where is the textbook entry that explains the "appropriate" affect of someone suffering from a misunderstood and maligned illness for 30 years?

 

[spit]

sdd1244 -- yes, there are many examples of "hysteria" that turn out to be physical illnesses that science simply hasn't identified yet. Even AIDS was seen this way by some, very early on.

Personally, I have no doubt that our emotional selves can effect our physical health in myriad ways. But it seems to me to be remarkably arrogant for any medical professional to assume that hugely debilitating and consistent physical symptoms that they can't explain right now must therefore be caused solely by "mental illness". The track record for such an attitude is, as you point out, far from stellar.

 

[Marylib]

For Oerganix from her/his psychiatrist

"Yes, yes, that must all have been frightful, losing your home and livelihood...

But there must have been something, something, dear, some trauma, some resistance to living in comfort? Something you have not been consciously aware of. Perhaps you feel a deep-seated guilt at being comfortable? Perhaps to win the love of a distant parent, you cast yourself into muddy waters, hoping that you could gain their attention. Yes, I grant you, 28 years is a little long to continue with a losing strategy...so maybe it is something deeper, something, ....Perhaps the pain you are in now give you an illusion of power...uh...uh...perhaps you secretly enjoy sneaking out of town to use your food stamps...uh, uh....perhaps you were traumatized by all that sewing...or by selling little chickes... uh, uh....certainly Victorians are notoriously hard to heat.....uh, uh..

Well! Time is up for today! What time would you like to book for next week?"

 

[Hysterical Woman]

Oerganix & Marylib

Oerganix - I have never seen a better written "characterization" of the absurdity with which people with this illness have to deal.

And Marylib, I am green with envy that I didn't think of and write your great response!

Green green green!

Maxine