Medscape: CFS: Wrong Name, Real Illness

[halcyon]

Nice to see that this is still the most popular article on Medscape at the moment! Over 100 comments, and most are very supportive....

It is nice indeed. I even saw comments from Dr. Klimas and Dr. Bateman. Unfortunately there are plenty of ignorant comments from doctors. It's almost as if they didn't even read the article.

 

[Countrygirl]

Dr. Nancy Klimas| Allergy & Clinical Immunology13 hours ago


Congratulations to Medscape for posting an article that finally urges clinicians stop debating the seriousness of this illness. For those of us that care for patients with ME/CFS, I assure you that we spend our days seeing terribly ill patients who need meticulous evaluations that look at neurologic, autonomic, immune, and endocrine systems followed by skilled management. Physicians who trivialize this illness do real harm, delaying or even blocking needed interventions. I urge my colleagues to learn more about the diagnosis and management of ME/CFS. the International Association for IACFS/ME is an excellent source of information (www.IACFSME.org).

 

[Ren]

For all I know, "Ofeigur Thorgeirsson" could be the "John Smith" of Icelandic names, but...

Two cups of coffee later and it was out the door to meet with Ofeigur Thorgeirsson, MD and specialist at The Ministry of Welfare in Reykjavík. [2013]

The Ministry of Welfare in Iceland...has the responsibility for administration and policy making of social affairs, health and social security in Iceland as prescribed by law, regulations and other directives.

Guðbjartur Hannesson is Iceland's new minister in charge of merging all welfare issues into one ministry. He must do this while the country's budget is cut to the bone in the wake of the 2008 crash which left the country's economy in ruins... The merger will be most felt within care for the elderly and the physically handicapped... There will be cuts...

http://wcrxfmstandby.wordpress.com/...-day-two-hellvar-quadruplos-and-cousins-1031/
http://eng.velferdarraduneyti.is/
http://www.nordiclabourjournal.org/artikler/portrett/portrait-2010/article.2010-09-29.0755673401

.

 

[Sidereal]

For all I know, "Ofeigur Thorgeirsson" could be the "John Smith" of Icelandic names, but...

Sounds like the same guy who is concern trolling the Medscape article. This one is very concerned about healthcare spending in Norway.

Dr. Ofeigur Thorgeirsson 21 hours ago

@derek pettitt Two comments: Exercise testing is not by any means an evidence of causality in this discussion. Using monoclonal antibodies to deplete B-cells (i.e. rituximab treatment) is a truly worrisome sign in where we are heading with this clinical condition. Frightening, and possibly"industry sponsored" development. The decision in Norway was political, not based on medical evidence - That is the nature of that society, which spends more than $9.000 per capita per year (that's more than the US) in health care costs (OECD data).

Dr. Ofeigur Thorgeirsson 21 hours ago

@Edward Kantowicz My compassionate approcah in helping patients with this truly disabling condition is through better understanding of this preplexing condition (sensory hypersensitivity). It seemst to me that the psychosocial part of the explanation is not good enough (it has to be a cytokine or B-cell immune dysfunction) and reflects the stigma that "softer" pathophysiologic diagnoses carry in our heavily biased "biomedical" approaches in health care. My compassion is to help people, but not by depleting there B-cell population but by going for the root of the cause. Chronic stress, including PTSD and alike are major players in many chronic somatic conditions, including CVDs and maybe even some cancers.

What a preposterous accusation of "political" and "industry sponsored" motivations behind the rituximab research. Fluge/Mella quite literally embody the best of what medicine can be but almost never is in practice. Any sane person would applaud their astute clinical observations and continued interest in pursuing biological treatments for this illness and helping patients in the face of overwhelming politically motivated biopsychosocial quackery in Norway personified by the likes of Bruun Wyller and other specimens who promote chronic stress theories, the Lightening Process and similar garbage. Though if one's job is to deny the devastating reality of chronic illness and reduce the numbers receiving disability benefits it's fairly easy to convince yourself of the wrong things.

 

[NK17]

This Dr. Ofeigur Thorgeisson (whose name sounds like an anagram) and his preposterous comments on Miriam Tucker's Medscape article are absolutely troll like.
We shouldn't waste our precious time in rebutting and replying, but maybe uploading Prof. Mella 12 May 2014 video in occasion of the presentation of "Perversely Dark", the norwegian documentary on severe ME, where he also talks about loosing his sister in law to ME, maybe can be a strong final statement.

 

[Never Give Up]

One week later and this is still bouncing around in the top 5 physician rated Medscape articles. Unfortunately much of the commentary from physicians calls ME psychogenic. I wonder why they are having such a strong reaction to it?

 

[Sean]

I wonder why they are having such a strong reaction to it?

The status quo never likes being threatened.

 

[Cheshire]

One week later and this is still bouncing around in the top 5 physician rated Medscape articles. Unfortunately much of the commentary from physicians calls ME psychogenic. I wonder why they are having such a strong reaction to it?

Yes, and this doesn't rely on the refutation of the article's arguments, but on their own conviction! A totally irrational reaction...

 

[Valentijn]

One week later and this is still bouncing around in the top 5 physician rated Medscape articles. Unfortunately much of the commentary from physicians calls ME psychogenic. I wonder why they are having such a strong reaction to it?

Because the alternative is that they are wrong. In many cases, that would mean that they have treated ME patients inappropriately, and even abusively. Being wrong would undermine their self-confidence, and harming patients would undermine their sense of worth.

Once doctors have started down that path, it's almost impossible for them to make an about-face.

 

[Never Give Up]

Yes, and this doesn't rely on the refutation of the article's arguments, but on their own conviction! A totally irrational reaction...

That is a great point! Care to post it in the Medscape comments section?

 

[Cheshire]

That is a great point! Care to post it in the Medscape comments section?

Thanks.
First, I'm not log in Medscape.
Second, english not being my first langage, I'm a bit uncomfortable to do so.
But you can post it if you want.

 

[Never Give Up]

Because the alternative is that they are wrong. In many cases, that would mean that they have treated ME patients inappropriately, and even abusively. Being wrong would undermine their self-confidence, and harming patients would undermine their sense of worth.

Once doctors have started down that path, it's almost impossible for them to make an about-face.

Once ME is fully defined and bio markers are identified, I would like to see us all use the occasion to demand a change of the physician culture that blames poorly defined illness on the moral or psychological weakness of the patient.

Some of my close college friends became psychiatrists and psychologists. During their training they became very judgemental of everyone all of the time, even the waitresses serving us coffee were picked apart and diagnosed. One friend actually said to me, "I am like a hound dog sniffing out mental illness wherever I go."

They stopped being enjoyable to be with. I let the friendships go. That culture should be changed.

 

[Roy S]

Once ME is fully defined and bio markers are identified, I would like to see us all use the occasion to demand a change of the physician culture that blames poorly defined illness on the moral or psychological weakness of the patient.

Some of my close college friends became psychiatrists and psychologists. During their training they became very judgemental of everyone all of the time, even the waitresses serving us coffee were picked apart and diagnosed. One friend actually said to me, "I am like a hound dog sniffing out mental illness wherever I go."

They stopped being enjoyable to be with. I let the friendships go. That culture should be changed.

That's very interesting about the behavioral changes you noticed from psych training. I wonder what Pavlov would have thought about that.

 

[MeSci]

Some of my close college friends became psychiatrists and psychologists. During their training they became very judgemental of everyone all of the time, even the waitresses serving us coffee were picked apart and diagnosed. One friend actually said to me, "I am like a hound dog sniffing out mental illness wherever I go."

They stopped being enjoyable to be with. I let the friendships go. That culture should be changed.

Oh dear. My niece is studying psychology. I have been telling her father to pass on my advice not to swallow the psychogenic crap, but I don't know if he's doing this. I get on well with him but I don't think he understands M.E. - at least he has never indicated that he does.

Hopefully I will get a chance to talk to her myself before too much damage is done...I rarely see family members due to distance.

If it looks as though they are going to visit, I will arm myself with a succinct summary of the issues.

Is there such a thing anywhere that I can copy/download? I was thinking of something that will fit on a A5 sheet.

There is so much to say, it's hard to know where to start when trying to summarise.

 

[Bob]

I haven't logged into MedScape. Is it worth creating an account to look at the comments section?

 

[A.B.]

If you're curious how doctors see it, then yes. I was positively surprised. There is the usual illness denying, but also a lot of interest in other explanations.

 

[Cheshire]

I haven't logged into MedScape. Is it worth creating an account to look at the comments section?

I accessed the comments without loggin. There http://www.medscape.com/viewarticle/837577

 

[Bob]

I accessed the comments without loggin. There http://www.medscape.com/viewarticle/837577

I just get a blank log-in page when I go to that link.

 

[MeSci]

I just get a blank log-in page when I go to that link.

Me too.

Why do they insist on logging in? I have enough log-ins to last several lifetimes! I tend to avoid sites that require it.

 

[Denise]

It's odd - sometimes I can get to without a log in and sometimes it only takes me to the log in page.