Gizmodo Article:The Battle to Finally Understand Chronic Fatigue Syndrome

[JayS]

That would go a ways towards explaining why it was not exactly well-written. That said, what I wonder is why Gizmodo picks this, out of everything we've seen in the past 2-3 weeks, to go with. Curious if Mosaic is a frequent source for them.

@ahimsa just in case I wasn't clear, I was 100% in support of your interactions on that thread. Sometimes I see threads develop where I sort of wish people would say different things, or say things differently, but the truth is that most of the time I think that commenters on 'our side' do a pretty good job.

 

[Esther12]

Ok. Here's the plan, why dont we take legal action against some or all of the PACE authors. Doesn't matter how crazy that may sound - we get in the news and people hear our story. In fact the crazier the better - more newspapers will cover it.

'The crazier the better' is not the best approach to advocacy for us right now imo.

 

[BurnA]

'The crazier the better' is not the best approach to advocacy for us right now imo.

Yikes, can't even say something tongue in cheek around here.

And here I was thinking we were all looking to get noticed and heard, oops my mistake.

 

[Nielk]

'The crazier the better' is not the best approach to advocacy for us right now imo.

It all depends on how the vague promises pan out.

 

[Sea]

Unfortunately, I've seen hints that some in medicine aren't as impressed with the results and implications of the 2 day CPET as we are, and as we think others should be.

But we can tell ourselves the CPET is objective evidence until we're blue in the face, but that doesn't necessarily make it so, even if that seems like a pretty good case.

I think the best response to people who question the strength of CPET evidence is to say, "CPET presents compelling preliminary evidence that a biosignature for ME/CFS has been found. The way to test whether it is a true biomarker is through a large, well-controlled (and well-funded) study."

The problem is that those who are not impressed are actually ignorant of the facts and not prepared to learn. There is no such thing as irrefutable evidence if people are not prepared to see.

It is necessary with the CPET to make certain that the equipment is working properly but beyond that there should not need to be controlled trials because there is already so much information out there on CPET in healthies and other conditions like heart disease and lung conditions.

I had a 2 day CPET and my results fit with what has been found in the ME/CFS studies. The tester however said the results were what would be expected in decondtioning. It is sad when even an exercise physiologist doesn't recognise that what is seen in the CPET in ME/CFS is completely different to what is seen in deconditioning. It means they are unfamiliar with the vast literature compiled well before this test was used for us.

The CPET would be useless as a general test if the results were not repeatable, if they changed depending on whether a person had been active or not the day before their test.

 

[ahimsa]

@ahimsa just in case I wasn't clear, I was 100% in support of your interactions on that thread. Sometimes I see threads develop where I sort of wish people would say different things, or say things differently, but the truth is that most of the time I think that commenters on 'our side' do a pretty good job.

Thanks! I have been having a lot of brain fog moments recently so I was not quite sure.

But the main reason that I rambled on for a while was to say that convincing a few commenters who disagree (not trolls, just folks who are ignorant/skeptical) may not be as important as the impression on those readers who do read the comments but don't post any comments of their own.

I have not had a chance to read the Gizmodo article yet (which I guess is also posted on Mosaic?) but I hope to do so soon.

 

[Kyla]

The Science Media Centre are based inside the offices of the Wellcome Trust who publish Mosaic.

This looks like a classic divide and conquer strategy. They have put out an article quoting known advocates out of context, calling us agitators, and paying brief lip service to the actual complaints.

If I were a cynical person (who me? ) I might say the idea is to get us all turning on each other as opposed to focusing on the evidence and presenting a strong united argument against PACE - because that united front is what has been happening for the last few weeks, and it is making them look quite bad

 

[Esther12]

Lots of reporters just respect the claims of 'experts' without looking at the evidence, so editorial interference isn't needed for that.

 

[SOC]

Lots of reporters just respect the claims of 'experts' without looking at the evidence, so editorial interference isn't needed for that.

No, but I was commenting on the peculiar structure of this article. It reads a bit schizoid. It starts out sensible, talking about Lenny Jason and the reality of ME/CFS and then suddenly veers off into crazy patient propaganda. I suggest there's a reason for the weirdness tacked onto the end of the article.

 

[worldbackwards]

No, but I was commenting on the peculiar structure of this article. It reads a bit schizoid. It starts out sensible, talking about Lenny Jason and the reality of ME/CFS and then suddenly veers off into crazy patient propaganda. I suggest there's a reason for the weirdness tacked onto the end of the article.

It all stinks of "finding an angle", something sensational to tie it to. All that bullshit about Holgate saving the day is highly suspect.

I think she just wants to make it into a good story and a load of bullshit about angry, dangerous patients baying for blood was as good as anything else.

I don't think it pays to overthink the press that much, they're rarely after anything more than clicks.

 

[Esther12]

It would be good to be able to see earlier drafts, and especially if the Tuller peices did lead to much of a re-write.

In terms of propaganda and timing, the UK med establishment would have liked a nice piece about how this big drama blew up because on patients being a bit confused by the sophisticated and helpful work being done by biopsychosocial researchers, and then a tiny vocal minority of extremists caused real trouble and upset, but now every-thing's back on track thanks to the CMRC and Holgate's good work. CBT/GET aren't a magic bullet and may not work for everyone, but we should still be grateful for them and the good news is that the latest PACE paper shows that their benefits are maintained over the long-term.

The Tuller pieces would have rather blown that up.

 

[viggster]

Which explains why an article that started out quite reasonably ended up as a BPS propaganda piece -- editors with personal bias. The authors was probably required to add the BPS propaganda to "balance" the patient viewpoint. "Add our viewpoint, or don't get published at all" kinda thing.

This is a comment from someone who was a source for Virginia on her article: You have no idea what you're talking about. Rampant speculation as to what went on behind-the-scenes for this (or any other) article is not helpful.

 

[SOC]

This is a comment from someone who was a source for Virginia on her article: You have no idea what you're talking about. Rampant speculation as to what went on behind-the-scenes for this (or any other) article is not helpful.

Okay, what am I supposed to get from this? Are you suggesting it would be best if I delete my post?

 

[viggster]

I just wanted to point out to PR readers that your statement was based on nothing.

Some of you feel the article was unfair, but read as a whole, I see it differently. Sure, it's easy to get hung up on how the writer characterized the Wessely school stuff. But that's a small part of the article. I think the piece very much captures that right now is an important moment for this illness. Lenny Jason is the focus of the article. Who is a bigger advocate than Lenny? The writer recounts a lot of the recent research that points to immune + autonomic dysfunction. And toward the bottom of the piece, Virginia writes:

"Jason says the only way forward is to bring in all the voices, even the strident ones, and let them have a say in any process to identify a name and a case definition that will get research on the right footing. 'Failure to do that will lead to the same type of bad feelings and struggles that have divided this field.' More than funding, he says, any indication that the culture is changing to one that engages with patients would be 'monumental'."

That is a very clear message & one I think most of the patient community would support.

 

[SOC]

I just wanted to point out to PR readers that your statement was based on nothing.

I agree that it was entirely speculation.

That is a very clear message & one I think most of the patient community would support.

I am in complete support of the first part of the article involving Lenny Jason. I find the last half, or so, of the article disjointed from the first, very helpful, part. Rehashing the crazy dangerous patient myth doesn't fit with the information from the interview with Lenny Jason and was harmful and unnecessary.

However, I am happy to defer to your greater knowledge of the media, and since my comment is hardly of major import, I will delete it. If you don't want it seen, I suggest you also delete from your reply.

 

[Bob]

@viggster, I appreciate that this isn't the worst article we've had to deal with, but it does come across as hostile towards the community. I don't think the author should realistically be expecting gratitude from the community for this. Sure, the article attempts to capture the drama and controversy, and does so in great journalistic style. But it is an unbalanced portrayal of the community, and it is disparaging towards the community, and it fails to explain the real reasons for the controversies. That's my interpretation of it anyway, and I've posted the most positive comments in this thread. It is also misleading about the latest pace trial outcomes.

Edit: Overall, I think the article may be a net positive, and I acknowledge that it includes helpful info.

 

[Esther12]

The article would be a nicer read if I wasn't stuck in the UK.

It's depiction of things here was pretty bleak imo (to someone who was really familiar with the situation, understood what was being said and how things were been presented).

But that's a small part of the article.

We all have different priorities, but that is the thing which I think is most important.

 

[SOC]

Sure, it's easy to get hung up on how the writer characterized the Wessely school stuff.

Yes, I admit to getting hung up this kind of BPS anti-patient propaganda being included in a partially (even largely) helpful article. I feel it tends to diminish the positive message. But maybe that's just me.

Crawley was advised to go public about the harassment. Her story appeared in medical journals, on television and radio. “Patients all over the world contacted me and asked that I not stop doing my work.” Ultimately, she credits the Medical Research Council’s interest in promoting CFS-ME research for helping her stay in the field, and she has been funded to investigate and describe the burden of the illness in young people in the UK. “My vision is to change what happens to kids with this illness.”

Others, including Wessely, did leave the field. A 2011 Guardian story details how he installed panic buttons at police request and had his mail X-rayed. He’s quoted saying that he felt safer studying combat-related post-traumatic stress disorder in war zones than working on CFS-ME.

It's not like that was all of this type of thing in this article. There was also this:

After the first PACE trial research was published, some patients in the UK reportedly hurled death threats and verbal assaults at researchers who studied graded exercise or cognitive behavioural therapy as treatments for CFS-ME. Most of the ire targeted Peter White and Simon Wessely, leading advocates of graded exercise therapy, but it seemed that anyone studying the disease was at risk.

and this

Unlike Jason’s emphasis on transparency and patient participation, however, the secret to the UK collaborative’s success, according to Holgate, is a membership charter that forbids harassment or abuse of researchers. In effect, patient groups are banned from whipping up a media frenzy over research findings.

The charter has already been tested a couple of times, says Holgate, who gave the aggressors a choice: apologise or leave. He’s even suggested that he’ll disband the collaborative completely if all parties don’t play by the rules.

“We set up the charter to protect researchers; anybody who joins us can’t abuse or upset that trust,” he says. “There is power in this to stop silly publicity which is quite destructive.”

Notice there is no mention of stopping the "silly destructive publicity" put out by the supporters of the BPS school, just publicity of any objection to BPS research.

So, while I think there's a lot of good in this article, there is also a lot of very bad.

I guess it's all in how you count. There's some good in the article, which I think is terrific. Balance it with the anti-patient propaganda, and it's a personal call whether the article on average is good, bad, or indifferent.

 

[akrasia]

I think she tried to undercut Holgate's unquestioning acceptance of the abuse argument by using @Jonathan Edwards comment:

This [charter] is
specifically to block patients who might be critical… critical in the
same way I would be,” says Jonathan Edwards, Emeritus Professor of
Connective Tissue Medicine at University College London, who is
advising the charity. “As far as I can see,” he says, “the harassment
referred to is legitimate criticism of bad science.”

But given the insanity of the last couple of weeks, any deference to the view of patient as terrorist can seem to be conferring legitimacy on BPS ravings, even if it's only written in the spirit of balance.

I don't think it's necessary or desirable from the point of view of advocacy to accept or naturalize this view. It should always be resisted, not only by patients but by responsible journalists.

What's interesting, though, is that she sought out Jonathan's views at all and published his very strong dissent.

 

[Esther12]

I think she tried to undercut Holgate's unquestioning acceptance of the abuse argument by using @Jonathan Edwards comment:

This [charter] is
specifically to block patients who might be critical… critical in the
same way I would be,” says Jonathan Edwards, Emeritus Professor of
Connective Tissue Medicine at University College London, who is
advising the charity. “As far as I can see,” he says, “the harassment
referred to is legitimate criticism of bad science.”

Yeah. I wasn't too sure how lots of it would read to people unfamiliar to the story.

To me, this did seem like a semi-attempt to present different views and yet still have it flow as a part of one story. To me, it read like there had been changes to it near the end of the writing process, and that really it needed more time and research put into it to make a coherent piece.

I found the stuff from Holgate pretty worrying, and I really wished the journalist to had pushed him for more details. I don't know if my irritation with how little solid info we're being provided by those who have power over us affected my reading of the piece. I felt like that whole piece could have done with more specifics really.