Medscape Rocks the IACFS/ME Conference

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Medscape isn't just any online medical resource; it's a highly respected website aimed at medical professionals. How sweet it's been then to see Miriam Tucker blast out three articles on the IACFS/ME Conference thus far.

Post-Exertional Malaise Takes Center Stage

[fright]
Tucker-Miriam.jpg
[/fright]Tucker, an astute reporter who's covered chronic fatigue syndrome several times before, probably knocked many medical doctors right between the eyes in her first article when she asserted that post-exertional malaise, not fatigue, was the core symptom of the disease.

Notice how Tucker completely recontextualizes this disease in her first paragraph by mentioning PEM first, and then speaking about ME/CFS in light of it.

"New research focused on the phenomenon of post-exertional malaise (PEM) is shedding light on the etiology of the illness that has been known as chronic fatigue syndrome."
Suddenly, ME/CFS is not just about tired people; it's about people who experience the "the phenomenon of post-exertional malaise" when they engage in activity. That put a whole different light on ME/CFS. If the docs didn't didn't get it about fatigue, PEM and ME/CFS from that, Tucker made sure they did with this:

"The name 'chronic fatigue syndrome' is being phased out not just because it is viewed as trivializing a condition that renders many patients completely or nearly bedbound but also because it gives the misleading impression that the illness is characterized simply by prolonged unexplained fatigue."
Tucker buttressed her claim that exertion and its effects are the key problems with findings from studies presented at the conference indicating that exercise alters cytokine levels, impairs cognition, alters brain functioning, increases lactate levels and results in inhibited heart rate increases.

Exercise studies are finally coming into their own in chronic fatigue syndrome; in no other disease do they hold such a pivotal place in explaining what is going on. That fact, alone, should give many naysayers pause.

Biomarkers

Tucker's next paper pointed out that the more than 100 papers presented at the conference substantiate the assertion that something has gone wrong biologically in this disease. Harvard professor, Tony Komaroff, sounded a note of vindication when he referred, at the end of the conference, to Dr. Montoya's cytokine paper, stating:

"Many of us for 20 to 30 years have held the hypothesis that symptoms of this illness likely are caused by increased cytokine levels in the brain due to chronic immune activation."
Researchers and doctors, Komaroff asserted, will find that chronic fatigue syndrome (ME/CFS) can stand on its own biologically if they'll just check out the literature.

"To those people out there who still question whether there is really anything wrong in this illness, my advice to them would be try consulting the evidence." Komaroff.
Tucker rounded off her IACFS/ME review with immune studies from Dr. Montoya, a potential immune diagnostic panel from Dr. De Meirleir, brain imaging studies and Dr. Hanson's metabolomic study suggesting that a hypometabolic state exists in ME/CFS.

Immune Drugs Having Impact

Her coup de grace came, however, I felt, in her latest article "Immune-Modulating Agents Eyed for 'Chronic Fatigue Syndrome'" where she introduced the physician-heavy Medscape audience to the work of two Norwegian oncologists, Drs. Fluge and Mella.

Many eyes must have widened considerably as doctors learned these two oncologists have found success with heavy-duty chemotherapy/autoimmune drugs such as Rituximab or cyclophosphamide. Those eyes may have widened further when they learned that the responders, with their long lag times between treatment and effect, are responding as if they had an autoimmune disease.

[fright]
breakthrough-wall.jpg
[/fright]Findings like these chip away at the belief systems that have pervaded this disease in too many doctors' eyes for too many years.

Fluge's metabolomic results suggesting that
"The disturbances in metabolic patterns in ME/CFS look like a struggle for energy"
only underscore the perhaps unique exertional problems in this disease.​

Finally, Tucker noted that Mella suggested that treatments for this puzzling disease may not be as far off as some might think.

"We believe the possibilities for effective treatment are rapidly increasing as we get to know more and more about the underlying disease pathomechanisms… We have to go through the necessary phases to get drugs approved, but a lot of things are happening. I'm very optimistic for the future."
My favorite part of Tucker's piece, though, came in a comment from Leopold Stengyl, a health care provider:
"Fluge and Mella are heroes in my eyes. They may very well end up solving this complex disease while the rest of the world is still not sure whether they even believe it exists."
It's getting harder and harder for doctors and researchers to dismiss ME/CFS.

Coming up shortly - Health Rising begins its survey of the conference.
 
Last edited:

Ron

Member
"Fluge and Mella are heroes in my eyes. They may very well end up solving this complex disease while the rest of the world is still not sure whether they even believe it exists."

There impressive and appear to be ahead of everyone at this point. They work with a sense of urgency that I appreciate.
 

Pained

New Member
"Fluge and Mella are heroes in my eyes. They may very well end up solving this complex disease while the rest of the world is still not sure whether they even believe it exists."

There impressive and appear to be ahead of everyone at this point. They work with a sense of urgency that I appreciate.
Medscape isn't just any online medical resource; it's a highly respected website aimed at medical professionals. How sweet it's been then to see Miriam Tucker blast out three articles on the IACFS/ME Conference thus far.

Post-Exertional Malaise Takes Center Stage

[fright]View attachment 2215 [/fright]Tucker, an astute reporter who's covered chronic fatigue syndrome several times before, probably knocked many medical doctors right between the eyes in her first article when she asserted that post-exertional malaise, not fatigue, was the core symptom of the disease.

Notice how Tucker completely recontextualizes this disease in her first paragraph by mentioning PEM first, and then speaking about ME/CFS in light of it.


Suddenly, ME/CFS is not just about tired people; it's about people who experience the "the phenomenon of post-exertional malaise" when they engage in activity. That put a whole different light on ME/CFS. If the docs didn't didn't get it about fatigue, PEM and ME/CFS from that, Tucker made sure they did with this:



Tucker buttressed her claim that exertion and its effects are the key problems with findings from studies presented at the conference indicating that exercise alters cytokine levels, impairs cognition, alters brain functioning, increases lactate levels and results in inhibited heart rate increases.

Exercise studies are finally coming into their own in chronic fatigue syndrome; in no other disease do they hold such a pivotal place in explaining what is going on. That fact, alone, should give many naysayers pause.

Biomarkers

Tucker's next paper pointed out that the more than 100 papers presented at the conference substantiate the assertion that something has gone wrong biologically in this disease. Harvard professor, Tony Komaroff, sounded a note of vindication when he referred, at the end of the conference, to Dr. Montoya's cytokine paper, stating:

Researchers and doctors, Komaroff asserted, will find that chronic fatigue syndrome (ME/CFS) can stand on its own biologically if they'll just check out the literature.



Tucker rounded off her IACFS/ME review with immune studies from Dr. Montoya, a potential immune diagnostic panel from Dr. De Meirleir, brain imaging studies and Dr. Hanson's metabolomic study suggesting that a hypometabolic state exists in ME/CFS.

Immune Drugs Having Impact

Her coup de grace came, however, I felt, in her latest article "Immune-Modulating Agents Eyed for 'Chronic Fatigue Syndrome'" where she introduced the physician-heavy Medscape audience to the work of two Norwegian oncologists, Drs. Fluge and Mella.

Many eyes must have widened considerably as doctors learned these two oncologists have found success with heavy-duty chemotherapy/autoimmune drugs such as Rituximab or cyclophosphamide. Those eyes may have widened further when they learned that the responders, with their long lag times between treatment and effect, are responding as if they had an autoimmune disease.

[fright]View attachment 2216 [/fright]Findings like these chip away at the belief systems that have pervaded this disease in too many doctors' eyes for too many years.

Fluge's metabolomic results suggesting that
only underscore the perhaps unique exertional problems in this disease.​

Finally, Tucker noted that Mella suggested that treatments for this puzzling disease may not be as far off as some might think.



My favorite part of Tucker's piece, though, came in a comment from Leopold Stengyl, a health care provider:


It's getting harder and harder for doctors and researchers to dismiss ME/CFS.

Coming up shortly - Health Rising begins its survey of the conference.
Does anyone know the details of an upcoming Spring conference?
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Who is Miriam Tucker? This is the first I've heard of her.
She's a journalist who's done some great work on ME/CFS. I met her at a Ron Davis fundraiser for the Severe ME/CFS patient project last year.

She did this story on Whitney Dafoe for the Washington Post - https://www.washingtonpost.com/national/health-science/with-his-son-terribly-ill-a-top-scientist-takes-on-chronic-fatigue-syndrome/2015/10/05/c5d6189c-4041-11e5-8d45-d815146f81fa_story.html

She did this story last year for Medscape on Wrong Name, Real Illness
http://www.medscape.com/viewarticle/837577

2015 - on the IOM report - Panel Says Chronic Fatigue Syndrome Is A Disease, And Renames It

2015 - on the announcement that ME/CFS will get more funding - Chronic Fatigue Syndrome Research Gains Funding, And Controversy

In 2014 on the need for a new name - http://www.cpr.org/news/npr-story/does-chronic-fatigue-syndrome-need-new-name
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
"Fluge and Mella are heroes in my eyes. They may very well end up solving this complex disease while the rest of the world is still not sure whether they even believe it exists."

There impressive and appear to be ahead of everyone at this point. They work with a sense of urgency that I appreciate.
I think their range of research and their ability to pivot and move ahead is really amazing...Fluge picked up on the Australian stuff over a year ago - that kind of made my jaw drop; nobody other than Ron Davis and Bob Naviaux seemed to pick up on that study.
 

BrianV

Member
Miriam has covered medicine for 20+ years and I've known her much of that time, as I worked in the same field in DC (where she lives) before getting sick. After she saw my letter to Dr. Collins in the Washington Post last year, we talked and she decided this illness needed a lot more attention. It speaks to the pervasiveness of misunderstanding about ME/CFS that a veteran medical reporter did not realize how serious it can be until someone she knew came down with it. Miriam deserves our respect and praise for taking on a big job and sticking with it.
 

Grigor

New Member
I get notifications from MedScape regularly about the latest medical news. Imagine my surprise when I got such regarding ME/CFS and it wasn't the usual garbage! :woot:
That's so cool. I really hope my physician friends get these updates as well. I post them on my Facebook. But not sure if they read them.
Some of them are real CBT GET proponents so this is real great. Correct information.
 

Pained

New Member
No - is there one?
I had heard earlier this fall from someone associated with Jared Younger Labs that there was some type of a conference next spring - no real info available at that time. Just wondering if this was really going to happen and if any details were known.
 

Gamboa

Member
The articles are all good and a big step forward but sadly very few people appear to be reading them.

There are only 19 comments in the first article and so far only 1 comment in the last article. I subscribe to Medscape and read a lot of articles about other diseases and there will often be hundreds of comments at the end of an article.

Someone also mentioned that they were under the "Psychiatry" category. I hope this is not true and couldn't find out if that was the case.

I am hoping that at least one of these articles will be featured in the weekly posting of Medscape articles that gets sent via email to subscribers.

I also plan to print all three articles along with some of your articles, Cort, and take them to my new GP as well as other doctors here in town. I know it is hard to do but if every patient did this or had a friend do this, we could get the latest news out into the medical world.
 

Cecelia

Active Member
Miriam Tucker writes really well, I think, conveying the science clearly and succinctly within a context of overall understanding. The background for her articles is that she has gotten it, that she is understanding, so she can order the new facts and information in a comprehensible way. We so benefit from this, and benefit from the venues where she is being published. These are serious news sites.

All so different from the past where news articles were often timid, meandering, partial or limited, and which often only inadequately conveyed the reality and the science of this illness.

But perhaps it has taken this community effort in recent years, with patients and doctors and researchers communicating much more fully. We have been claiming our reality and addressing it more effectively. We have been building the context out of which a journalist like Miriam Tucker can write so effectively, and (thinking soccer) take the ball down the field. I feel the same way about your effectiveness, Cort, and about that of increasing numbers of us throughout our "team". Every time we progress in our knowledge and ability to communicate, and support each other in our self acceptance and confidence, we move much closer to our goals!
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I get notifications from MedScape regularly about the latest medical news. Imagine my surprise when I got such regarding ME/CFS and it wasn't the usual garbage! :woot:
Yes, they did a CBT childs study in the UK earlier this month....A nice break from that kind of stuff.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Miriam has covered medicine for 20+ years and I've known her much of that time, as I worked in the same field in DC (where she lives) before getting sick. After she saw my letter to Dr. Collins in the Washington Post last year, we talked and she decided this illness needed a lot more attention. It speaks to the pervasiveness of misunderstanding about ME/CFS that a veteran medical reporter did not realize how serious it can be until someone she knew came down with it. Miriam deserves our respect and praise for taking on a big job and sticking with it.
Her piece of Whitney Dafoe in the Washington Post I think it was really timely and I'll bet helped a lot. The more people like Miriam reporting on ME/CFS the better we are. I asked at the conference how many articles she thought Medscape publish - as I remember she said two - and they've done three so far. :)
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I had heard earlier this fall from someone associated with Jared Younger Labs that there was some type of a conference next spring - no real info available at that time. Just wondering if this was really going to happen and if any details were known.
I certainly hope there is one! :)
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
The articles are all good and a big step forward but sadly very few people appear to be reading them.

There are only 19 comments in the first article and so far only 1 comment in the last article. I subscribe to Medscape and read a lot of articles about other diseases and there will often be hundreds of comments at the end of an article.

Someone also mentioned that they were under the "Psychiatry" category. I hope this is not true and couldn't find out if that was the case.

I am hoping that at least one of these articles will be featured in the weekly posting of Medscape articles that gets sent via email to subscribers.

I also plan to print all three articles along with some of your articles, Cort, and take them to my new GP as well as other doctors here in town. I know it is hard to do but if every patient did this or had a friend do this, we could get the latest news out into the medical world.
That's a great idea - this is Medscape, after all; all doctors know about it..
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
The articles are all good and a big step forward but sadly very few people appear to be reading them.

There are only 19 comments in the first article and so far only 1 comment in the last article. I subscribe to Medscape and read a lot of articles about other diseases and there will often be hundreds of comments at the end of an article.

Someone also mentioned that they were under the "Psychiatry" category. I hope this is not true and couldn't find out if that was the case.

I am hoping that at least one of these articles will be featured in the weekly posting of Medscape articles that gets sent via email to subscribers.

I also plan to print all three articles along with some of your articles, Cort, and take them to my new GP as well as other doctors here in town. I know it is hard to do but if every patient did this or had a friend do this, we could get the latest news out into the medical world.
There aren't many comments but when I first went on the site two of her recent articles were #1 and 2 in the Top Physician Reads box so hopefully they are getting read.

You're right about all the comments on other posts = look at an earlier ME/CFS article from her:

Chronic Fatigue Syndrome: Wrong Name, Real Illness

Miriam E. Tucker
Disclosures | January 08, 2015

  • 437 comments
!
 

Sue Stevenson

Active Member
I guess one silver lining if it is in the Psychiatry section is that the psychiatrists can start educating the doctors then.

Which would be deliciously ironic.
 

BrianV

Member
I see Tucker's piece on Rituximab in the "Conference News" section, and the bottom links are to the "Latest in Rheumatology." It does not appear to be in the psychiatry section of Medscape.
 

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