OT: CFS/ME and Online Activism

Submitted by mghorm on March 13th, 2019 at 10:16 AM

https://www.reuters.com/investigates/special-report/science-socialmedia/

Disclaimer: I fully understand if Brian and the MGoBlog team deem this to be outside of the scope of what they would like this site to be about. I only bring it because CFS/ME has been a topic of discussion on the blog before and I thought the specifics of this article may be of interest to those in this community.

Reuters published an investigation in the link between online activism and the effect is is having on medical research. The article uses CFS/ME as an example to illustrate the negative effects that internet activism may be having on scientific research. CFS/ME is a health condition with very limited understanding of the underlying causes and even more limited treatment options. Some researchers into this condition have been studying possible cognitive behavioral talk therapies with some success treating patients. Online activists have engaged in campaigns to discredit this research due to the possible classification of the condition as psychosomatic or being psychologically based in any way. These campaigns include direct online harassment of the individual researchers, petitions against conferences where these researchers are speaking, and campaigns to get studies pulled from academic journals. As a result, many researchers have ceased studying the subject and the total amount of research into the condition is decreasing. This goes against the expectation for a condition gaining recognition amongst the medical community, with some positive clinical results indicating potential treatments. To reiterate, I do not have goal for this post other than to make people aware of this issue. It seems like an issue this community would be interested in. 

Comments

Robbie Moore

March 13th, 2019 at 10:38 AM ^

Problems:

1. Social media has provided everyone with a megaphone.

2. Media amplifies the strident opinions of a relatively few on social media creating the appearance of widespread agreement.

3. It has become OK to harass/intimidate people with whom you do not agree.

4. Online bullying is a thing.

5. We have replaced E Pluribus Unim with Ubi Est Mea.

6. Facts no longer matter. Everyone is entitled to their own set.

7. There too many acronyms.

 

 

Im thinkin bou…

March 13th, 2019 at 10:48 AM ^

Chronic Fatigue Syndrome/Myalgic Encephalopathy is a disease that affects one of our dear writers on the site, Ace.  I'm not the best to explain it, but it hurts him and he has issues doing things that are simple for others.  Whenever it is brought up, there are loads of support and several idiots who get outraged bc they cannot put themselves in another's shoes. There is your background for ME/CFS on this site.

JonSnow54

March 13th, 2019 at 11:29 AM ^

I'll stick up for the OP here.  I'm legitimately curious, in what way do you think this is a shot at Ace? 

Maybe I didn't read it cynically enough, but my takeaway from the article is that it's about how online toxicity & bullying are causing a reduction in researchers, clinical trials, and funding for studying this horrible disease.  The article also talks about how debilitating the disease can be, about how many suffer from it, and about how researchers & research money leaving the field are bad outcomes for sufferers of the disease.

mghorm

March 13th, 2019 at 11:49 AM ^

Thank you. To be clear, I was in no way trying to take a shot at Ace or trying to downplay the reality of this condition. If anything, it is more a PSA that there are groups out there collecting money to fund these activist campaigns that may look a lot like research charities. If one is looking into donating to this cause, they need to make sure the money is going to research and not to activist causes. 

ThWard

March 13th, 2019 at 2:46 PM ^

I have no problem with the post, and I have no opinion on the underlying topic. Not intended as shot. But CFS/ME has hardly been a random Mgo board topic on its own. I just can't imagine a PSA on this topic hits the Mgoboard if not for Ace's very public struggles with the condition. I think that's a fairly uncontroversial observation.

MGOTokyo

March 13th, 2019 at 7:30 PM ^

As one who has followed the issues around CFS/ME for years before Ace came forth with his problems, I am familiar with both sides of the issue from both medical and personal prospectives.  I also have hesitated in the past to join in on the discussions, not wanting to be classified as "one of the several idiots who get outraged bc they cannot put themselves in another's shoes."  The major issue here is that there is a group of people who have a "disease" which has no specific symptoms unique to the majority of the group, no tissue or cellular abnormalities, no sources of an infective agent, no regional 'clumping', and no apparent treatments that seem to be even somewhat effective.  In other words, no scientific basis.  I cannot recall any other example where a disease gets named and categorized without at least some objective basis of existance. 

Mr. Teller has become a world-wide advocate for the CFS/ME cause, and currently owes his financial well-being to it.  He also has enlisted the support of one of the world's most well known virologists (Dr. Vincent Racaniello) who has given him an international platform on at least 4 occasions on his 1-hour+ podcast (This Week in Virology).  I can't recall Dr. Racaniello ever having someone on his show with as little basis for their conclusions.  Initially, the issue was that of a poorly performed/interpreted published study but that has mushroomed into the situation described by the OP article.     

There is no current answer to these people's problems.  If I had one, I'll be in Stockholm soon to collect my Nobel Prize.  On multiple occasions, Ace has announced an association with a new miracle doctor, outside of the UM medical community, who has finally come up with a source/diagnosis of his problems (that included a surgical cures in Alabama?).  I'm not aware that any of these have been effective.  So, when sources such as Cochrane in April 2017, concluded "there was moderate quality evidence to show that exercise therapy had a positive effect on people’s daily physical functioning, sleep and self-ratings of overall health”, why would anyone dismiss and attack this finding just because they didn't agree with the results.  It in itself is a benign treatment, we are not injecting arsenic here.  On any topic, there is evidence-based research that may be on both sides of the problem and may take years to be resolved.

So the point here is not who is right or wrong.  What is important is that internet bullying, especially by poorly informed, non-scientific and mostly anecdotal opponents, is only harming the ultimate goal of finding a source, diagnosis and cure for possible disease, which is detrimental to all of these patients.  Unfortunately, this has become the norm in our social media society of today.

That being said, I love Ace's work, wish him well and hope that he is able to return to the blog ASAP.

 

Bodogblog

March 13th, 2019 at 11:54 AM ^

Ace is very strongly in the camp of this being a physical disease and not a psychological one that can be treated with behavioral therapies.  Ace is very appreciated on this site, so many begin with an emotional defense of his position.  From a logical standpoint, I understand beginning the discussion on "his side" because he's the only one many of us know suffering from it, and he has a much better idea of what it is than anyone on this blog. 

But that doesn't end the debate, just begins it.  Because as OP states, this condition is not well understood in any way, and many doctors and medical professionals - who would be more informed experts than even patients - fall on either physical or psychosomatic.  

I think there's an assumption in the post you replied to that the OP is indicting Ace as one of those who may be online against the psychosomatic community.  

Roanman

March 14th, 2019 at 7:38 AM ^

To begin with, I don't think the original post is suggesting that Ace is participating in any thing other than trying to get well.

That Ace is convinced that his issue is physical in nature is very easy to understand as it for damn sure feels physical to him. There is also a feeling of stigma and insult associated with the word psychosomatic which I think everybody would prefer to avoid having directed at them. After all, a physical malady is simply a matter of one having picked up a disease of some sort, a mental disease demonstrates some supposed weakness of character or morality. Nobody wants that. So, given the choice, we would all ... I think ... prefer a physical condition over a mental one.

But, is not your brain part of the body? So ... here's my question, What The Fuck difference does it make? We have so very little knowledge of what the hell is going on in our brain. Study the damn thing.

I have a partial answer on that particular issue and you will be tempted to either laugh or get mad. I blame Alinsky.

We have come to a place in our society in which we actively seek out one flaw or error in some person who disagrees with us on any subject, and we use that flaw or error to discredit the entirety of that person's body of work. The consequences are that having employed that tactic, we back ourselves into a very tight corner out of fear that one revealed or admitted flaw or error in our life will be used to discredit the volume of our life's work as well.

This political tactic fouls everything we do because nobody is always right, yet we cause ourselves to defend to the death positions that may be wrong, or may be wrong now by virtue of new information, out of fear of being violently discredited across the board. It is particularly poisonous in science because science is for the most part about obtaining new information by being wrong ... a lot.

That didn't work. Shit! That didn't work either. Fuck me! What's going on here? How bout this?

People are not allowed to change their mind. The consequences are that when they are wrong, they stay wrong and frequently violently so. This explains how it is that research is politicized and otherwise bludgeoned into acquiescence to the local mainstream conclusions.

The only way to be right much of the time or at least more, is by means of a willingness to change an opinion when confronted with better information. A lack of willingness to do that condemns a person to fear and the bitter hatred that always accompanies fear.

 

bo_lives

March 14th, 2019 at 1:10 PM ^

You've hit on a key point I think a lot of people don't appreciate. The distinction between brain and body isn't a clear one. Every aspect of our lives is experienced through the mind. The lay public doesn't quite seem to understand this, but it's a simple fact of neuroscience.

I understand where the frustration comes from, because being told "it's all in your head" doesn't help anyone. But it really is all in your head, because everything is, whether you are suffering from a broken leg or somatic symptom disorder (which is the DSM-V diagnosis Ace probably has). The difference is that most people can recover fully from a broken leg without talk therapy.

There's been a lot of great research and paradigm changes in psychiatry over the years and there is hard evidence that talk therapy can lead to actual changes in the nervous system that will help people with a very wide range of conditions, including somatic symptom disorder. But it seems there is still a faction out there that is fixated on fighting the outdated psychiatry of the past that had a tendency to insist people "bootstrap" themselves out of their problems.

Bobby Digital

March 13th, 2019 at 1:46 PM ^

"These campaigns include direct online harassment of the individual researchers, petitions against conferences where these researchers are speaking, and campaigns to get studies pulled from academic journals. As a result, many researchers have ceased studying the subject and the total amount of research into the condition is decreasing."

No one seems outraged but I find the above interesting.

the fume

March 13th, 2019 at 7:29 PM ^

oof:

 

Colin Barton, chairman of the Sussex and Kent CFS/ME Society – a patient group in southern England – said talking therapies and graded exercise helped him recover to the point that he can lead an almost normal life. He told Reuters that in his experience, patients who talk about having been helped by psychological or graded exercise therapies come in for abuse just like the researchers. They face accusations that they were never ill in the first place; that their condition was misdiagnosed; and that their recovery is therefore fake, he said. As a result, he said, many recovering or recovered CFS/ME patients feel forced to withdraw from the debate.

mb121wl

March 13th, 2019 at 11:49 PM ^

"Online activists have engaged in campaigns to discredit this research due to the possible classification of the condition as psychosomatic or being psychologically based in any way."

I wonder how Ace feels about this.  Or Lauren Hillenbrand (https://stanmed.stanford.edu/2016summer/leaving-frailty-behind.html) or any CFS/ME sufferer.  I can tell you how I feel:  After 30 years of having my life ruined by this condition, the (ignorant) suggestion that it might be the consequence of clinical depression is an insult.  Shall I send you the test results and diagnostic explanations that persuaded a court to overrule the Social Security Administration and declare me disabled?

In the early 80s, a doctor hired by the SSA patronizingly suggested to me that "we all get a little depressed at times, but we get over it."  Even today, that sort of talk makes me homicidal.  The only thing worse that feeling ill all the time is having someone who knows nothing of what you're going through try to explain away your symptoms.

 

mghorm

March 14th, 2019 at 11:44 AM ^

I think there is a fundamental difference between someone suggesting that a health condition has some type of psychological basis and writing if off as symptoms of clinical depression. There are old ideas about mental health that completely isolate the psychological component from the underlying biology. This leads to claims that “it is all in your head,” writing it off as an issue that someone should be able to tough it out. Our societies understanding of mental health is evolving and seems to be moving towards the integration of mental health as an extension of health as a whole. Looking at the extremes, they executed men with Shellshock during WWI. Contrast this with the modern understanding of PTSD, as a psychological disorder with a number of potential underlying biological and psychological causes and treatments. All of that said, I do not know anything about the cause of your condition, and I am sorry that you have had to struggle through not just the physical reality of your condition but the stigma around it. The best encouragement I can offer is that your struggles within our system has cleared the path to some extent for those unfortunate to follow.

One other note. A condition with such little understanding of the underlying causes as CFS/ME means that the causes may not be the same for all people with this diagnosis. The diagnosis is a fallible creation of man that categorizes these symptoms under a single heading to allow further research and treatment. What presents as a similar set of symptoms across a set of patients does not necessarily have the same origin.

In Britain there are at least 50 specialist chronic fatigue syndrome services that treat around 8,000 adults each year under government guidelines, offering behavioural and psychological therapies. Research published in July 2017 showed around a third of adults affected by the illness who attended these specialist clinics reported substantial improvement in their health.  

The fact that these psychological treatments have had some effect for 1/3 of patients and none for the other 2/3 indicates the possibility of disparate underlying causes. I wish you well going forward with your struggles.

bo_lives

March 14th, 2019 at 1:39 PM ^

The DSM-V term for what many people like to call CFS/MS is somatic symptom disorder. It's a diagnosis of exclusion, which means a lot of other causes need to be ruled out first. An important point is that in somatic symptom disorder, the symptoms patients feel are considered every bit as real as a broken leg.

As far as modern medicine is concerned, there are a LOT of things relating to the nervous system and the immune system that are very hard to explain and manage. Even diseases like multiple sclerosis, that have a very well studied biological basis, can act in very mysterious ways. So it's possible people suffering from somatic symptom disorder will eventually be classified under something else in the future.

The truth is that talk therapy can help almost everyone, regardless of whether they are feeling physical pain, are depressed, or even completely healthy. Unfortunately, a lot of people seem to think taking a pill or having surgery are more "legitimate" approaches, so they seek that instead.