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Morgellons: real disease or imaginary malady?

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
We don't even want any diagnosis. The only thing we want desperately is to get better. We are willing to try anything at all. Most of us have tried the psycho-approach and failed miserably. All they offer are things that make us worse, not better. So we obviously moved on from that. I don't understand how this basic logic is so lost on them...

Exactly...
 

whodathunkit

Senior Member
Messages
1,160
Dick wads like Wessely are the only knew being hunted. I only wish he and his minions would get this so we could shove their words down their throats like they cry like little babies at how crap they feel.
@minkeygirl, why don't you tell us how you *really* feel? :lol: Thanks for the chuckle.

The thing that really fries my eggs is that mainstream medicine seems so arrogantly to think that if we can't find it and quantify it, it doesn't exist. As if there are no unknown viruses or bacteria or any other microbe that humans can get infected with that could cause these symptoms the profession is currently scoffing at. As if we already know about every microbe there is to know about! As if we know everything there is to know about human physiology optimal levels of nutrients, hormones, neurotransmitters, etc. As if we are at the pinnacle of our knowledge and technology and will never discover anything new. It...it boggles my mind sometimes, the sheer arrogance of the attitude. They'd rather blow people off and marginalize them than admit there's probably more they don't know that stuff they do know.

And then there are others who go "Show me proof!" meaning stuff like rat and mouse studies in PubMed, but with another breath (usually when the mouse model "proves" something they don't hold with) tell us things like mouse models can be manipulated any old way and shouldn't be taken as proof of anything. :mad:
 

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
I always enjoy hearing the reasonable voice of experience.

Here's a comment on the article from a Medscape reader:

Judy Warshaw| Registered Nurse (RN)15 hours ago


I don't know and even if I felt I did, it is not for me to say what the truth is regarding these maladies. I would like to say, however, that I am seventy two years old and I've spent all of my adult years in medicine, most of that time as an R.N. The first injection I saw was a Demerol tablet prepared by dissolving it in sterile water, in a spoon, held over a Bunsen burner. Since that time I have seen unbelievable changes in medicine. I have seen yesterday's certainties give way to certainties in the opposing direction so many times. You would think that medical history would point out to the medical community the danger of making absolute statements as too many times they have had to wear the signs of their ignorance, hopefully with at least red faces, but yet in their arogance they steam right ahead using that old trash can of "hysteria" for all the ills that they have not yet been able to understand. Just having discovered the lymph system connection to the brain, something of which there was no knowledge some short time ago, you would think would point out the total inappropriateness of making emphatic statements about most anything they "know". I know that medicine is a continually evolving area of knowledge that impacts both the quantity and quality of people's lives in such a profound way that approaching it with full awareness of it's limitations is necessary to fairly treat any patient. Thankfully, most patient's diagnosis is of the black and white variety, as much as that exists, with lab results, X-rays and other defining parameters but in the back of the mind of any diagnostician, particularly if missing the comfort of abnormal X-rays, lab work, etc., should be the ability to acknowledge, "we don't know everything", even if only to themselves and quit compounding the misery of an "unknown" ill with statements of it's hysteria or it's all in your head. Insisting that a patient's illness is imaginary when it is affecting their life in a major way is just a few steps past cruel. Maybe physicians can be taught to refrain from jumping to that "certainty" so quickly! I have seen "hysterical" patients dying of CAD, cancer, autoimmune disorders, Lyme disease, etc. Perhaps physician's can be taught to forgo some of the arrognance that leads to the "it's all in your head" trash can approach that is painfully used with these patients. What if it is "all in their head"? Well nobody gains from that type of labeling and enough uncertainty exists that another approach needs to be used to alleviate some of the misery. I'm quite sure something can be worked up by people who have the use of some of the finest minds in the country.
 

Hip

Senior Member
Messages
17,824
Looks like Professor Andrew Scull, in his very own words, has revealed both his and Wessely's intellectual limitations; his own words have betrayed his unsuitability in dealing with a complex technical medical condition such as ME/CFS.

In this Medscape article, Scull writes that Wessely "proclaimed that psychological and social factors were far more important in perpetuating it, and that it largely resulted from dysfunctional illness beliefs and coping behaviors. His reward was to be inundated with abuse and personal attacks, even threats on his life."

It seems that Prof Andrew Scull does not have the nous to understand that in science, the onus is on proving your assertions; you don't just go around willy-nilly proclaiming things with no basis. Any fool can just proclaim something.

If Andrew Scull has this idea that science is simply about proclaiming things, as opposed to painstakingly collecting evidence to prove them, perhaps his university tenure at the Department of Sociology, University of San Diego, should be placed under review.

Sociology at least tries to be a science, so if Andrew Scull is not up to thinking scientifically, perhaps he needs to be replaced in his university by a shaper, more scientific mind.
 

SOC

Senior Member
Messages
7,849
He's not a doctor and seems to have no background at all in biology or medicine:
What is Medscape doing letting some sociologist spout off about medical issues? Can I, as a research engineer, publish a Medscape article about MS without doing any particular research to support my article? Allowing completely unqualified people publish articles about subjects on which they know nothing certainly lowers Medscape's credibility.
He obtained his B.A. with first-class honors from Balliol College at the University of Oxford in politics, philosophy, and economics, and an M.A. and Ph.D. in sociology from Princeton University.
:eek::eek::eek: EEEEEEK! Now they're exporting their BPS nutters! Guard the borders! Run for the hills! The redcoats are coming! The redcoats are coming!

So basically he's talking out of his anal orifice, which seems par for the course for him. He's published a lot, but also suffers from having a big-mouth and lack of concern for supporting evidence. He's been called out for a nasty book review he did where he basically just disagreed with everything but didn't cite to anything. And in 2009 he wrote a letter proposing that the inferior University of California campuses be shut down to save money, so they could focus on the prestigious ones such as the one he works at.
So, another arrogant, self-absorbed, knows-he's-superior-to-the-plebeians slimeball.
Actually, it looks like he isn't head of the department anymore.
Well, thank goodness for that, at least.
This really tells us that it is these psychs who are the desperate ones, that they like to have "hysterical" people to scapegoat and will look to pin the label on any suitable (to them) target.
They're starting to look like the hysterical ones to me. I'm seeing a lot of paranoia, too, with their laughable stories of militant PWME out to get them. They do tend to over-react to people having a different opinion from theirs, don't they?
 
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SOC

Senior Member
Messages
7,849
Medscape is just a media outlet. Think of it as a Daily Mail focused on medical professionals. Then you'll start to understand the clickbait articles like this one.
Okay, well that makes a kind of sense, then. They had no credibility to begin with. :rolleyes: Why medical professionals would want, need, or read a Daily Mail equivalent is beyond me. You'd think they'd have more respect for their profession.
 
Messages
15,786
What is Medscape doing letting some sociologist spout off about medical issues? Can I, as a research engineer, publish a Medscape article about MS without doing any particular research to support my article?
As an engineer who knows approximately 100x more about ME than the author, you can't even comment on his article. Medscape requires that commenters be some sort of medical practitioner. Probably because they'd look like a complete quackfest very quickly if patients were allowed to cite to the research proving their authors wrong.
 

eafw

Senior Member
Messages
936
Location
UK
What is Medscape doing letting some sociologist spout off about medical issues?

The cultural aspects of medical practice are interesting, and relevant, so a sociologist is not out of place on a general med-based website (which is what medscape is).

The problem is that the sociologists and psychs, or even the medics who write about the historical and current practice of medicine produce such awfully poor content. By and large they are establishment old boys who are recycling out-dated beliefs, rather than people who look at the social issue at all critically and by drawing on evidence, and the experience of others.

They are writing these pieces to feel good about themselves, which is why they get so upset when anyone challenges them on the nonsense they spout. It's all about their egos, and they can't see beyond that.
 
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user9876

Senior Member
Messages
4,556
Looks like Professor Andrew Scull, in his very own words, has revealed both his and Wessely's intellectual limitations; his own words have betrayed his unsuitability in dealing with a complex technical medical condition such as ME/CFS.

In this Medscape article, Scull writes that Wessely "proclaimed that psychological and social factors were far more important in perpetuating it, and that it largely resulted from dysfunctional illness beliefs and coping behaviors. His reward was to be inundated with abuse and personal attacks, even threats on his life."

It seems that Prof Andrew Scull does not have the nous to understand that in science, the onus is on proving your assertions; you don't just go around willy-nilly proclaiming things with no basis. Any fool can just proclaim something.

If Andrew Scull has this idea that science is simply about proclaiming things, as opposed to painstakingly collecting evidence to prove them, perhaps his university tenure at the Department of Sociology, University of San Diego, should be placed under review.

Sociology at least tries to be a science, so if Andrew Scull is not up to thinking scientifically, perhaps he needs to be replaced in his university by a shaper, more scientific mind.

When someone posted an extract that statement made me wonder if the writer was using a degree of irony but having read a bit more I think he is serious. But the sentence sums things up quite well. A "scientist" declares something about a disease. Those suffering from the disease question him and ask for evidence but in doing so fail to show the respect that a doctor expects from patients. So the doctor, scientist rather then justifying his theory with evidence and demonstrating how what is known fits his theory say but patients are abusing me how dare they question me. The scientific community rally round and have a campaign to dismiss patients who may question the scientists theories.
 

SOC

Senior Member
Messages
7,849
A "scientist" declares something about a disease. Those suffering from the disease question him and ask for evidence but in doing so fail to show the respect that a doctor expects from patients. So the doctor, scientist rather then justifying his theory with evidence and demonstrating how what is known fits his theory say but patients are abusing me how dare they question me. The scientific community rally round and have a campaign to dismiss patients who may question the scientists theories.
As if they are scientists. :rolleyes: At best they are natural philosophers. They look at something, make up some hypothesis about it, and then expound upon their thought process. Objective testing, evaluating their hypotheses against all the available evidence, and other steps that distinguish philosophy from true science are not part of their modus operandi.

Heck, they even lack the rigorous logic of a good philosopher. They're closer to a loud mouthed drunk ranting on about women or politics -- all emotion and opinion and no evidence or logic.
 

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
As if they are scientists. :rolleyes: At best they are natural philosophers. They look at something, make up some hypothesis about it, and then expound upon their thought process. Objective testing, evaluating their hypotheses against all the available evidence, and other steps that distinguish philosophy from true science are not part of their modus operandi.

Heck, they even lack the rigorous logic of a good philosopher. They're closer to a loud mouthed drunk ranting on about women or politics -- all emotion and opinion and no evidence or logic.
Great points @SOC, psychosomatic theories are really poorly thought out medical philosophy, not medical science. That concept would make a great comment, anyone care to? @alex3619? You would do a fabulous job at that! Medscape does allow non docs to comment, I have done so many times in the past.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
His reward was to be inundated with abuse and personal attacks, even threats on his life.

Sir Simon's rewards also include generous payments from the disability insurers, a conflict of interest condemned by a UK parliamentary report, The report called for a real investigation into these connections, an investigation which never happened, of course.


first-class honors from Balliol College at the University of Oxford in politics, philosophy, and economics,

Sounds like the perfect education for an establishment propagandist. I trust he is being well rewarded for loyalty and service to the Empire.
 
Messages
13,774
Sir Simon's rewards also include generous payments from the disability insurers, a conflict of interest condemned by a UK parliamentary report, The report called for a real investigation into these connections, an investigation which never happened, of course.

I think Wessely has weaker links to private insurance than people like Sharpe/White etc. It's always hard to know what's going on behind the scenes though.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Gibson ME Parliamentary Inquiry said:
There have been numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUMProvident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here. The Group find this to be an area for serious concern and recommends a full investigation of this possibility by the appropriate standards body.

I'm pretty sure I have read someplace that Sir Simon has been a consultant to the DWP, but I could be remembering wrong. The Science Media Centre admits that Sir Simon is on their team. They also brag about being industry funded. So perhaps Sir Simon has only benefited indirectly. And perhaps the Moon is made of cream cheese after all...
 
Messages
13,774
I'm pretty sure I have read someplace that Sir Simon has been a consultant to the DWP, but I could be remembering wrong. The Science Media Centre admits that Sir Simon is on their team. They also brag about being industry funded. So perhaps Sir Simon has only benefited indirectly. And perhaps the Moon is made of cream cheese after all...

Yeah, they're are those Wessely letters/notes included in the DWP file and probably more behind the scenes too. 'Generous payments' can mean lots of things - it wouldn't surprise me if he was paid for the piece he had published by Unum... quite possibly a generous amount by the standards of most PWCs, but probably not much compared to the amount Sharpe/White/etc have received from private insurance. Personally, I wouldn't jump in with claims about Wessely being paid by private insurance when we don't have any evidence of significant payments.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Personally, I wouldn't jump in with claims about Wessely being paid by private insurance when we don't have any evidence of significant payments.

If he wants to sue a patient in a foreign country for libel, bring it on! It will take a good investigative journalist, a whistleblower, or a legal proceeding to bring out the evidence. Discovery is a very powerful tool to do that. There are severe penalties for "perverting the course of justice" (love that phrase!) by hiding documents and emails.

The president of FIFA may not have directly accepted any bribes, but he is clearly going down anyway...
 
Messages
13,774
If he wants to sue a patient in a foreign country for libel, bring it on! It will take a good investigative journalist, a whistleblower, or a legal proceeding to bring out the evidence. Discovery is a very powerful tool to do that. There are severe penalties for "perverting the course of justice" (love that phrase!) by hiding documents and emails.

The president of FIFA may not have directly accepted any bribes, but he is clearly going down anyway...

It's more that I think we've got so many legitimate complaints that can be supported by good evidence that it's a mistake to start saying things which, if anyone were to investigate, may not hold up and could lead to people thinking CFS patients are treating Wessely & co unfairly. They're doing what they can to emphasise the misguided-angry-patient-terrorists theme, so it's best to avoid anything like that imo.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
They're doing what they can to emphasise the misguided-angry-patient-terrorists theme, so it's best to avoid anything like that imo.

They are going to attack patients and advocates no matter what any of us say or do, or don't do. My attitude is, they are going to do what they are going to do - I can't stop them. But I have to do what I think is right - and that includes making as much noise as possible.

Here is an excerpt from a letter that @ahmo just received from @taniaaust1

I aren't using the phone either due to not being able to access my wheelchair when I need it. (I had 3 falls in 2 days, one nasty and the other I banged my head on wall, I was left covered in bruises all cause I allowed others to encourage me out of wheelchair. Then I was left crawling on bruised knees, I even started getting a sore from crawling. So now I just sit/lay in cell doing hardly a thing. I've had much other terrible treatment here too:

The huge issue here is prison doctor is a non-believer in ME/CFS "no-one believes in that illness, not even the rheumatologists." Sighs at least he was honest in his views, but when doctors like this are responsible for how I get treated here, what hope is there? Main social worker knows someone who recovered. "He did what he had to to get well; why can't you?"

Thanks again, yours sincerely Tanya

Sir Simon and friends are guilty of inciting physicians around the world to abuse patients. How many have committed suicide as a result of that abuse and neglect? And how many more will die before the Weasel School and their corporate masters are held to account?

A public mock trial of these "doctors", followed by a hanging in effigy, is in order. They are guilty of contributing to the suffering and death of many patients.