Gizmodo Article:The Battle to Finally Understand Chronic Fatigue Syndrome

[medfeb]

I've been struck by this article, and others, that we're not getting the message out that the latest PACE publication demonstrated that patients are right about CBT and GET. i.e. that CBT/GET have no sustained or long-term therapeutic value. I think we need to start shouting about this, because it changes everything in our favour. i.e. we are portrayed as idiots because we complain about the only "evidence-based" treatment on offer, and yet the evidence now validates patients' opinions because it has shown that CBT/GET have no sustained therapeutic value.

What about the more fundamental issue that the proposed disease theory and mechanism of action of a treatment should fit what is known about the disease.

The biopsychosocial theory boils down to the idea that the debility and severity of the disease is the result of deconditioning and maybe symptom focusing, which is purported to be the result of false cognitions and a fear of activity. But Snell and others have demonstrated that ME can be objectively differentiated from deconditioning using CPET. IOM panel chair Clayton said that the level of debility seen with these patients can not be explained by deconditioning. And Rituxan is certainly not being trialed for the treatment of deconditioning. The disease theory and the claimed "mechanism of action" of PACE's treatment regimen - of all these BPS studies - is not scientifically or medically compatible with the disease that we are all talking about.

The only way this theory and approach survives is by ignoring the biomedical evidence and by overly broad definitions that create cohorts of patients with some indeterminate collection of conditions. We should be in a position to undercut the entire belief structure, especially with the evidence that now exists regarding PACE.

 

[mfairma]

One thing I was struck by, reading this article, is that, as a casual reader, I think I would have thought "if all the patients are saying that these treatments are inappropriate and they don't want them, then why are the treatments being forced upon them? If the patients don't want the treatment then the treatment isn't sustainable!" It seems like an obvious conclusion to make, based on the article. And the question arose: "why aren't researchers collaborating with patients to find a treatment that they want, instead of forcing a treatment they don't want on them?" So I thought the article was positive in that respect.

I agree with you that the article was loosely positive on the disease, Bob.

My concern, however, is this: Our ability to achieve the degree and pace of change that we deserve is contingent on our ability to tell a clear story and to contrast our community and our disease against the BPS school, with all its shoddy science, bad faith, obfuscation, and manipulation. If this sort of cloudy narrative becomes dominant, we won't be able to make the case for a manhattan project for this disease, because the public won't understand what makes our story so compelling. For us to get what we deserve, the public has to understand that these last decades need not have been wasted, that charlatans took a disease and buried it in the cynical advancement of their own personal interests and that generations of patients have suffered horrendously and died for no other reason than that.

Articles like this sell the public a story that washes away the bold colors of our story. Sure, it mostly portrays the disease as biomedical, where many don't, but that is such a low minimum, especially in light of where this community sits, with the Rituxan and PEM studies, the IOM, powerful new backers like Davis and Lipkin and Edwards, and PACE beginning to crack.

 

[Seven7]

My issue is this is outside of CFS community, Gizmodo is read by EVERYBODY I know in US, this is what regular people are seeing out of nowhere with no background.

We have to see this as a person who doesn't know what is going on and what does it do to us as community and what we can do to give it a positive spin since we are in the spot light. How can we take advantage of the big exposure.

 

[Seven7]

our ability to tell a clear story

I wish English was my first language and I would offer the editor our point of you. Do you think if you contact them we can get a fair piece out???

 

[SOC]

I don't think she's doing that and I'm not sure that what she says isn't fair comment.

I agree. I'm saying that the way it came off in the article may not be the way she intended it to sound and she might want to bring that up with the journalist.

 

[Bob]

What about the more fundamental issue that the proposed disease theory and mechanism of action of a treatment should fit what is known about the disease.

I agree with all your points, but I think the latest PACE study helpfully adds to the evidence we can use, and it gives us direct evidence to use against CBT/GET because it demonstrates that they don't work. I think it will help us, esp in the UK, if we can use their own evidence against them. I think the latest PACE study is actually strong evidence in our favour. e.g. CBT/GET cannot possibly be curative and they cannot 'reverse' the illness if they don't have any therapeutic benefit. The latest PACE study totally undermines and trashes their model of illness.

 

[Wildcat]

.
Professor Stephen Holgate first publicly aired an intention to create a 'Medical Research Council Interdisciplinary Expert Group on M.E.' and publicly stated 'that a collaborative needs to be formed from charities [sic], the MRC and researchers' way back in July 2009.

This article creates the impression that Professor Holgate's actions in creating the UK MRC Collaborative on ME (CMRC) was a kind of rapid reaction response to the 'shock horror' 'harassment' UK media frenzy of 2011.

But that is simply false.




Professor Stephen Holgate quoted in 'The Battle to Finally Understand Chronic Fatigue Syndrome'
http://gizmodo.com/the-battle-to-finally-understand-chronic-fatigue-syndro-1741658406

2015 media article:

'Following the 2011 PACE trial controversy, hostilities between researchers and patients in the UK were so fierce it was unclear how to move forward at all. The situation was desperate, says Stephen Holgate, an immunopharmacologist at Southampton General Hospital. He had never studied CFS-ME before, but believed he could bring some much-needed impartiality to the field.
He knew the community had to start afresh. He wooed several charities to join a new CFS-ME research collaborative, and secured more than £1.6m from the Medical Research Council to fund five grants. The collaborative wants to raise the profile of CFS-ME research, talk to patients and professionals about priorities, and review the UK and international research landscape.'






2009 report on the RSM 'Medicine and me' conference of July 2009. Commentary on Stephen Holgates talk.

https://meagenda.wordpress.com/2009/07/25/rsm-medicine-and-me-event-commentary-by-john-sayer/

RSM “Medicine and me” event: Commentary by John Sayer (Chair, M.E. Support-Norfolk)


Royal Society of Medicine “Medicine and me” event on ME and CFS held Saturday, 18 July 2009

'Prof Stephen Holgate (University of Southampton) spoke on “ME: a research orphan for too long”. He said we need research because too little is known [sic] and said that the history of M.E. has dictated a mental health approach, it being perceived as having evolved from neurasthenia [‘nervous debility’]. He said, “It’s a system disorder” and that ‘omics’ should be used – i.e. genomics, proteomics and metabolomics. He referred to ‘ME/CFS’ as a “condition or conditions (25 or more)”; that the government won’t allow integrated research. He is putting together a workshop in November (the Medical Research Council Interdisciplinary Expert Group on M.E.), a systematic review deciding priorities, saying that a collaborative needs to be formed from charities [sic], the MRC and researchers, and that there is a need to ‘join up’ patients from clinics/centres.'

.

 

[JayS]

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. Not very often, but it makes me wonder what docs really think that they won't speak about, 'behind closed doors,' so to speak.

The only evidence I can offer regarding this is people who claim to be doctors and offer comments in public, in this case on news articles. So of course from the get-go we know that we can't prove they actually are doctors, though one can usually tell at least if they speak with enough knowledge that we can reasonably presume that they are. An example was on the most recent NPR piece from a week or two ago, that Miriam Tucker wrote about the NIH. First someone who either claims to be a doctor or speaks authoritatively about medicine states that CPET testing hasn't been replicated. They were corrected, then it becomes clear they made a mistake and were referring to PET scans, not CPET tests. Still, concerns about this were dismissed as 'pseudoscientific.' PEM is characterized as a 'crypto diagnosis.' Non-specific, a 'meaningless' symptom.

Another poster claiming to be a doctor asks derisively about controls vs patients in CPET testing, claims it's utterly inadequate and just plain inappropriate to use in CFS, and ends up asking how this could be considered objective evidence in a subjective symptom syndrome it was not designed to be used in. PR's own @ahimsa debated this person. The next complaint was the size of the study, it was suggested that--the Keller paper? Can't recall. That it should be considered low-quality evidence. Claims made of cherry-picking, sampling bias, and that there were/are issues with the statistical analysis. And more criticism followed.

I've seen this for awhile now. Whenever we see something that seems to be presented as fairly rock-solid evidence that conveys scientifically that which we feel we know about this, it seems that it's only a matter of time before someone comes along to knock it down, and to do so in a way that employs medical knowledge and authority in a way that sometimes seems above our pay grade--and without expert knowledge, it's not always a good idea to keep arguing. At least, from the point of view that once you get to a certain point, it seems unlikely that you're going to change any minds, which surely has to be an important goal. And that's not a knock on anyone who does take on people like this, who I don't really consider trolls, not if they are actually arguing the merits of the science. Besides, that's how science is supposed to work, or so we're told: evidence should be able to withstand this sort of scrutiny.

A little different was the guy on the Atlantic articles recently who kept going on about how his wife's a neurologist and claimed that all the top neurologists in this country view CFS as psychiatric. I don't really doubt that statement. That guy was more trollish, but it doesn't mean he was misrepresenting anyone's position. And I've seen other examples of people claiming medical knowledge--and they seemed to know what they're talking about--doubting everything from the Rituximab studies, to the IOM report, you name it. Does it make sense to dwell on negative comments made in public? Of course not. 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. It's like continuing to repeat the stuff about 'male pattern baldness' for which there never seems to be any firm evidence, or recycling riffs on quotes from people like Wessely that may or may not actually exist, or are far out of context if they ever actually did, at least to the extent anyone can prove. I am interested in what doctors actually think behind closed doors, and in my experience these doubting Thomases are more significant than we'd care to acknowledge, especially given the entirely reasonable suggestion that they are trolls who are best ignored.

I think we can spot a troll who deserves to be ignored. But when someone starts reducing what we view as our best evidence to a big pile of nothing, I don't see anything wrong with paying attention. They're not alone.

 

[Nielk]

My issue is this is outside of CFS community, Gizmodo is read by EVERYBODY I know in US, this is what regular people are seeing out of nowhere with no background.

We have to see this as a person who doesn't know what is going on and what does it do to us as community and what we can do to give it a positive spin since we are in the spot light. How can we take advantage of the big exposure.

This author did extensive interviews with many in the community. This has been in the works for months with a lot of background work. The resulting article is based on the personal choice by the author. She chose what facts to include and what to leave out as well as what context to put them in.

 

[Wildcat]

.
.
.
The portrayal of UK patients, patient groups, and charities in relation to the UK Medical Research Council ME Collaborative, in this article is grotesque and defamatory.

Can Professor Holgate, the CMRC Chair Dr Esther Crawley, Dr Charles Shepherd, or any member of the UK MRC Collaborative on ME (UKRC/CMRC) please explain and justify (with evidence from the UK CMRC records) the statements in this article? This sounds like Professor Holgate and his big stick threatening the CMRC members, threatening the charities, and threatening 'patient groups' with the CMRC 'gagging clause' that has caused so much concern in the ME patient population. The concerns about the CMRC Charter 'Gagging Clause' from the charities who decided NOT to sign up to be members of the CMRC Collaborative now appear totally justified.

The worst concerns about the inclusion of a 'gagging clause' in the UK CMRC Charter (that members have to sign up to) are being realised in this inflammatory article.

If Professor Holgate believes he has been misquoted, how is he going to rectify the damage to the ME population, and the massive damage to the perception of the UK MRC ME Collaborative, from this inflammatory article?


http://gizmodo.com/the-battle-to-finally-understand-chronic-fatigue-syndro-1741658406

' His [Professor Stephen Holgate] approach sounds a lot like what Jason wants in the USA: a collective of medical practitioners, researchers, patient groups and funders working to strategically improve the evidence base for this disease. 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.'

.

 

[Bob]

I agree with you that the article was loosely positive on the disease, Bob.

My concern, however, is this: Our ability to achieve the degree and pace of change that we deserve is contingent on our ability to tell a clear story and to contrast our community and our disease against the BPS school, with all its shoddy science, bad faith, obfuscation, and manipulation. If this sort of cloudy narrative becomes dominant, we won't be able to make the case for a manhattan project for this disease, because the public won't understand what makes our story so compelling. For us to get what we deserve, the public has to understand that these last decades need not have been wasted, that charlatans took a disease and buried it in the cynical advancement of their own personal interests and that generations of patients have suffered horrendously and died for no other reason than that.

Articles like this sell the public a story that washes away the bold colors of our story. Sure, it mostly portrays the disease as biomedical, where many don't, but that is such a low minimum, especially in light of where this community sits, with the Rituxan and PEM studies, the IOM, powerful new backers like Davis and Lipkin and Edwards, and PACE beginning to crack.

Yes, I totally agree. I suppose I'm hoping that this article might do some good, and isn't entirely negative. I think it might help open minds a little bit and lead people to ask questions. And it might allow us to build on it by addressing some of the many issues raised. But it is a disappointing article and (as you say) a very long way from ideal. It shows that we have a long way to go yet to convince the media and the public. We need to have more influence over the media narrative, going forwards. I think we've made progress, but there's clearly some way to go.

 

[Cheshire]

Yes, I totally agree. I suppose I'm hoping that this article might do some good, and isn't entirely negative. I think it might help open minds a little bit and lead people to ask questions. And it might allow us to build on it by addressing some of the many issues raised. But it is a disappointing article and (as you say) a very long way from ideal. It shows that we have a long way to go yet to convince the media and the public. We need to have more influence over the media narrative, going forwards. I think we've made progress, but there's clearly some way to go.

Yes this article is pretty odd, with some decent parts and some really awfull. But maybe it's going to achieve something...

 

[medfeb]

I agreed with all your points, but I think the latest PACE study helpfully adds to the evidence we can use, and it gives us direct evidence to use against CBT/GET because it demonstrates that they don't work. I think it will help us, esp in the UK, if we can use their own evidence against them. I think the latest PACE study is actually strong evidence in our favour. e.g. CBT/GET cannot possibly be curative and they cannot 'reverse' the illness if they don't have any therapeutic benefit. The latest PACE study totally undermines and trashes their model of illness.

Agree completely with this. My thought was that the biological evidence that they have chosen to ignore adds additional weight to the trashing of their model of illness.

 

[ahimsa]

(I'm jumping into the middle of a thread because I was tagged -- have not read the rest of the thread yet, so I hope this is not too out of context)

Another poster claiming to be a doctor asks derisively about controls vs patients in CPET testing, claims it's utterly inadequate and just plain inappropriate to use in CFS, and ends up asking how this could be considered objective evidence in a subjective symptom syndrome it was not designed to be used in. PR's own @ahimsa debated this person. The next complaint was the size of the study, it was suggested that--the Keller paper? Can't recall. That it should be considered low-quality evidence. Claims made of cherry-picking, sampling bias, and that there were/are issues with the statistical analysis. And more criticism followed.

I do remember my comment but forgot which article and had to look it up. It was this NPR article -
http://www.npr.org/sections/health-...ndrome-research-gains-funding-and-controversy

I would modify what you said a tiny bit (hope it doesn't seem like hair splitting) but I actually was not trying to debate with the person. I don't have the mental clarity or energy (or the temperament) to do the kind of "here's why you are wrong" debate. I tried to frame my response in the form of answering questions that he/she raised. (My comment started with, "How is the CPET test objective evidence? Good question!")

But I did think it was worth sharing some information in this situation. The person may have seemed skeptical (and uninformed) but he/she did not seem not angry or abusive.

Yes, the person came back with even more questions/concerns. But I think this particular person was simply one of those folks who likes to look smart/skeptical but who might have been willing to accept evidence in the end.

Why do I say that? Because on my very last comment, after I agreed with one of his/her points by saying something like, "Yes, we do need more research studies to confirm this finding," this same user upvoted my comment. You don't upvote a comment if you're a troll or if you're determined that you'll never agree with the other person.

So, it's possible that the interaction changed that person from being a complete skeptic to being at least open to the possibility that the CPET shows something unique in at least a subset of ME/CFS patients.

However, convincing a single user is never my primary goal. I can't say what others have as goals when they post comments. But when I post a comment I try to add information with the hope that those who are NOT commenting will read it and perhaps be persuaded to see the illness (and patients) in a different light. I don't actually care as much whether a single reader gets convinced or not.

I do agree that it's not worth engaging with people who are angry, abusive, or showing other signs of being a troll (just wanting to stir the pot, make people angry, just for LULZ (laughs)).

I also agree that in the end it's the science that matters. But the climate (what people think about ME/CFS) matters, too. Without a supportive climate then it's harder to get more research funds, get disability benefits approved, get respect and adequate treatment from doctors, and so on. So I think it's worth it (if and when people have energy and inclination) to make respectful comments on some of the articles in the news.

 

[Ecoclimber]

Gizmodo, although a high impact site is still a design and technology blog, not exactly a bastion of historical journalistic credibility given their history in prior events especially with Apple.

 

[user9876]

Yes this article is pretty odd, with some decent parts and some really awfull. But maybe it's going to achieve something...

I read it as she was spun a line by the SMC and Crawley but then did a bit of reading as well. Although I wonder if she and started with Lenny Jason and asked others including the SMC for comment and then got spun the line. I got the impression that she had not really read all of Tuller's article. But it is hard to tell.

One thing that struck me was Crawley complaining about FoI requests. I hadn't heard of any requests sent to her and there don't seem to be any on whatdotheyknow.com. My assumption is she is repeating White's claims and getting misquoted?

 

[Yogi]

I read it as she was spun a line by the SMC and Crawley but then did a bit of reading as well. Although I wonder if she and started with Lenny Jason and asked others including the SMC for comment and then got spun the line. I got the impression that she had not really read all of Tuller's article. But it is hard to tell.

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

 

[Esther12]

I read it as she was spun a line by the SMC and Crawley but then did a bit of reading as well. Although I wonder if she and started with Lenny Jason and asked others including the SMC for comment and then got spun the line. I got the impression that she had not really read all of Tuller's article. But it is hard to tell.

One thing that struck me was Crawley complaining about FoI requests. I hadn't heard of any requests sent to her and there don't seem to be any on whatdotheyknow.com. My assumption is she is repeating White's claims and getting misquoted?

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

I wondered if it was going to be a pretty consistently terrible SMC/Wellcome Trust piece, and then the Tuller pieces came out so it was re-written. There was no pressing of Crawley or Holgate over the real problems with biopsychosocial research, so maybe those interviews were done earlier? There very little mention of the details of problems with the research anyway - which is rather a key thing if you want to write about patient disatisfaction/anger with researchers.

I suspect Tuller may have saved us from something much worse.

 

[BurnA]

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.

 

[viggster]

. 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."