'Recovery Is Possible: Lessons in ‘ME/CFS’ Recovery from YouTube [Goldsmiths]

[Chandelier]

I am more than familiar with both the article, the thread on it and him posting, the contrarian who won’t discuss his article and complains “is that all you’ve got?” when nobody is around at 3am when he’s turned up wanting to go on at people about (not his article) things related to his article.

Hahaha, that was so surreal!
AL definitely earned his spot in a historian’s future book about all the crazy stuff that went down in ME/CFS history.

 

[rvallee]

If I wanted to take their side in the debate for a moment for why patients are "activists" against psychosomatic theories, I think this would be a better argument:

Start from the premise that I gave above: patients are harmed by exertion and so they need to ensure that pointless treatments are not being forced on them. And then follow with something like either:

1) the fear of PEM is so strong that they won't even consider trying treatments for which there is evidence of benefit, or2) they are simply uninformed and don't realize that there is strong evidence that these treatments are beneficial.

There isn't much reason to try and reason this out. It's just vibes. Everyone making noise out of it has their own vibes-based reasons for doing it.

When you look at the history of science, it's filled with "this lone academic was the laughingstock of his discipline, until one discovery proved him right". It turns out that experts are serious and reasonable about things that are known, but are generally just as woolly and weird about things as anyone else until then. Hence the history of peptic ulcers, and autism, and a huge number of other nearly identical stories where ignorance creates a permission structure for all sorts of weird ideas and behavior.

Things are just not that deep here. This isn't about competing theories, it's just people vibing to what they want reality to be, and being asses about it.

 

[rvallee]

Interesting, thanks. So maybe there are some parents being accused of child abuse because authorities think long COVID isn't real. But it's still hard to understand why this would play a significant role in pushback against psychosomatic theories for long COVID but not classic psychiatric conditions.

Because in psychiatric conditions it's usually not argued anymore that they can just behave differently, let alone that they don't even have a real disease/illness. It used to be the case, but that's mostly all been turned on us. It obviously plays no such role in any chronic illnesses, but it's a bullshit excuse that convinces a lot of people based purely on vibes.

They're all retroactive excuses, they don't actually matter, and when things shift everyone will have always believed correctly, or whatever. Humans don't change.

 

[JellyBabyKid]

LC suffers from the same weird cognitive dissonance as ME, which is

It is real and does exist. That’s not what this patient has though.

combination of patient being very ill and nothing helping, and the illness going for a long time at a level that’s severe enough that medics are involved,

They do believe LC and ME are “real” they just don’t understand what they look like in clinical practice

They don’t have experience of treating people with these diseases long-term

They don’t have specific LC ME consultants who oversee, advise, guide etc.

That is a very succinct summary and identifies a lot of points of failure where things are going wrong.

I am curious as to what can be done to change each one, as that would significantly change people's experiences, if not always the trajectories of the illness.

As noted elsewhere, the e-learning is a good intention paving the way to hell, as no one has time to actually do them, and no motivation, as a significant number don't believe it exists, or is that bad, or isn't just psychosomatic whiners. Catch 22; we know what it is and it's isn't this, we don't know how to treat it, we don't have experience and we don't have an expert. Nothing will change because of the reasons the problem exists in the first place.

Edit: word change to better reflect what I meant (brain fog)

 

[MrMagoo]

Yeah I feel like a lot of this wouldn’t happen if a wide range of medics understood that there likely won’t be any improvement and more importantly that’s not because of their interventions.

I suspect some of it is that they are expected to “achieve something” with these patients, and they can’t. Unsure whether that’s just internalised, or NHS metrics, peer pressure, IDK.

I think many of them know “it’s real” but there’s a disconnect when actually seeing it play out.

I also base this on experience of really kind and understanding managers suddenly, for unclear reasons, getting shitty, impatient and unreasonable on week 10 of Bob’s absence due to (cancer/broken legs/insert “real” illness).

At some point it in time just becomes a problem which must be resolved, and Bob must recover and get into work immediately with no reference to the obvious reality that he’s still sick/in hospital/now also had a stroke.

Patience expires, all reason is abandoned and he is now ill in order to swing the lead/lead a personal collapse of the workplace/take the Michael out of the manager by not coming to work.

 

[MrMagoo]

Hahaha, that was so surreal!
AL definitely earned his spot in a historian’s future book about all the crazy stuff that went down in ME/CFS history.

Actually I’m being cute, not rhetorical.
It’s DARVO in action.

I think whether by accident or design the loopy brain brigade have Co-opted underdog status from us, the “anti-recovery” biomedical meanies.

The patients who struggled for decades against the GET CBT PACE psych establishment have finally started to get a voice, get recognition and now -just like that- we are the establishment!
we control them, we control research, we control government direction and policy, the NHS, the medical colleges, all of medicine…

Quashing the voice of loopy brained people who have no problem getting research, websites, YouTube channels, etc out there. They just want to help heal people and we are their nemesis. They are the “real” patient voice!

And we haven’t changed a bit, the only concession they make that we’ve been here for years is that we’re still threatening researchers and those who have recovered, stopping them from commenting on Reddit subs, attacking them on X, you can see it all over.

 

[bobbler]

Well done on this, I thought it was very good.

One point which I think is important for random people reading it:
“About two-thirds of the subjects reported full recovery”

Was the term “full recovery” used? I haven’t read the report but recall someone quoting the definition of recovery used and it was wishy-washy and I don’t think it suggested participants had to claim full recovery.

EDIT: ignore this - I hadn’t scrolled down when I wrote this and see it has been posted above already

No. When I went thru the full report itself I remember finding the bit where their ‘definition used’, which isn’t any normal definition was stated (in their methods? It ls in that post anyway) . I don’t have it in me to search back to find those myself right now but it’s definitely there

I know it was nothing to do with medical recovery because they state that with it.

There was no medical or disability related definition or check for the before either I think it says too. These are just ‘recovery stories’ - someone used the term ‘reverse funnel from these narratives of people who were mostly now practitioners’ in a comment somewhere (might have been a social media reply if not here) which felt a good wording to develop…

Of course these were all on page numbers like 30 onwards when most would have given up out of 189 pages, and different to what it was summarised to in the abstract and forward and political appeal many pages that ‘fronted’ the doc and were longer than a normal paper would be even if you just read those

 

[neurophusion]

@Dolphin. From page 32 of the full report:

• 77% (n = 58) of participants self-report full recovery.
• 23% (n = 17) of participants self-report recovery ongoing.

 

[Dolphin]

@Dolphin. From page 32 of the full report:

• 77% (n = 58) of participants self-report full recovery.
• 23% (n = 17) of participants self-report recovery ongoing.

Thanks.
On the next page it has:
“Some participants who are fully recovered talk about continuing to practice techniques that they had used as recovery tools (such as meditation, breathing techniques or pacing practices) after regaining their health. ‘Recovering’ denotes having significantly improved in health and capacity, while not being completely free of symptoms. Except in relation to the below numbers, the accounts of those who are in the process of recovery have not been disaggregated from those of participants who are fully recovered.”

 

[MrMagoo]

@Dolphin. From page 32 of the full report:

• 77% (n = 58) of participants self-report full recovery.
• 23% (n = 17) of participants self-report recovery ongoing.

What, near 1/4 of them are just in the process of recovering? These people.

Maybe I’m in the process of mining cheese on the moon. That’s my narrative. Now I just need some investment…

 

[neurophusion]

Recovery is Possible

The wider community, focused on the message of ‘non-recovery’, needs to listen in. Until now, no study of recovery narratives has looked at what people say about recovery in ‘natural’ social contexts, such as on social media. [...] The Recovery Report: What 75 YouTube Interviews Say About Recovery from Chronic Fatigue Syndrome and/or Related Illnesses.

Ah yes, the breakthrough we have all been waiting for folks, social media vibes! Nothing says high-quality science quite like 75 cherry-picked anecdotes from a recovery channel on Youtube, most who are now selling the paradigm, literally not figuratively.

At best it shows that recovery is possible, but we already knew that. In the report, almost half were ill for under 5 years, possibly suggesting chances of recovery are better in the earlier stages, but we already knew that too.

Neither of these observations are suppressed secrets. What matters is which factors lead to recovery, and that is not really gained by cherry-picking stories and lowering standards of evidence.

Featured prominently on the homepage is an apparent contradiction:

“Healing is never ending.” —CFS, recovered after 4 years.

PACE-type logic here, like lowering the required CGI score in the recovery definition because it better "represented the process of recovery". Recovered but still healing? Healing from what exactly, if already recovered? Lingering psychological trauma? Perhaps loss of income now to be regained from selling recovery courses?

(Edit: @Dolphin found a statement which might help explain that: "Some participants who are fully recovered talk about continuing to practice techniques that they had used as recovery tools (such as meditation, breathing techniques or pacing practices) after regaining their health.")

I bet there will be heavy overlap between those who will promote the report on recoveryispossible.info as strong evidence for the effectiveness of mindbody interventions, but also trash the patient surveys of thousands of individuals reporting ineffectiveness from mindbody interventions as being unreliable evidence due to selection bias.



["Recovery is possible" by Sarah Cefai represents a watershed moment in #MEcfs #longcovid. We in medicine have by and large failed these patients. Recovery comes through a self-realisation of agency and then finding help to recover- outside of medicine. The medical establishment and @MEAssociation need to get up to date with the science and what PATIENTS are saying recoveryispossible.info]

Haha @ Paul Garner describing it as a 'watershed moment', in his tweet which only received 10 likes after 7.3K views. What on Earth happened to his entire career as an expert in evidence synthesis? It seems that he just tossed it all aside because of his own personal experience?

That is what struck me about Garner's story. When he was in the earlier stages of lingering effects of COVID, he read about CBT/GET and doubted it. But after being on the road to recovery after pacing, then the mysterious phonecall, he pulled a 180 degree turn and attacked those that previously helped him. All because his own personal experience or belief system changed, not because the evidence-base itself had changed.

People with Garner's qualifications would usually cringe at 75 cherry-picked recovery stories involving some supplement or medication stack promoted on a Youbtube channel with the majority selling those same products. They would howl loudly about quackery and demand randomised-controlled trials to rule out a range of biases.

But here Garner is, boasting about it as if it is the dawn of a new era for patients everywhere, all because it aligns with his experiences and his beliefs. It fits really well with the unofficial motto of the psychosomatic wing of the 'evidence-based medicine' movement who look down on non-blinded trials of drugs or supplements: "Rules for thee but not for me!"

 

[Sean]

For the record, and hopefully obviously, the Sean commenting on David Tuller's blog is not me.

-----------------

Some good comments on the article from others.

Particularly like this one from Emily Fraser:

Occasionally cancer goes into remission after people have prayed a lot. Some call that miraculous. Some call it random luck. No one calls it a standard of care.​

Now that is how to make a point.

Urgh I am so over this narrative that patient voice is oppressed and the medical biological establishment don't want people to recover (for reasons unknown. Surely there would be some villainous intent?usually we’d blame Big Pharma here but obviously there’s no pharma for us, so what’s the motivation?) anyway, BioMedicalBaddies (played by the Child Catcher from Chitty Chitty Bang Bang?)suppress the plucky ‘umble ever so hard-done-to recovered brain trainers (played by Dickens characters such as Oliver Twist and Bob Cratchett).

It is pure propaganda. The arbitrary reversal of the reality. Either they genuinely cannot distinguish reality from falsehood, or they don't care and are just jumping on the bandwagon, because reasons.

Either way they have disqualified themselves from being taken seriously.

For the "fear of having your children taken away" part: There are millions of people with long COVID. I can't currently recall ever hearing about parents that have kids with long COVID being afraid of their children being taken away because the child's illness could be psychosomatic. I'd be surprised if this was a significant issue in the world. Why is this not a huge issue for parents that have kids with depression?

As others have already covered, this is a very real thing alright, going back decades. Some of the nastiest shit patients have had to deal with. It is one thing – though of course still inexcusable – to do this to an adult who at least has some chance of fighting back, but to do it to children and their family is just inexcusable cruelty.

See the work of Prof. Esther Crawley (ret) in the UK.

My response to 1 might be: I could maybe actually see this being the case if a treatment worked but only had a tiny chance of increasing function, and only then by a small amount. But it's a risk benefit calculation, not an irrational fear. If a psychosomatic treatment legitimately made a large portion of patients recover, I doubt patients would be greatly reluctant to try it.

And many did try it, and various other flavours of psycho-behavioural treatments, and a whole lot more, and those approaches all failed comprehensively to deliver.

[Cue the unfalsifiable you just didn't believe/want to get better enough excuse.]

For 2: They need to do a better job of demonstrating that there's a real effect if they strongly believe this is the case, as the published trials to date haven't done the job.

This. Until they have a decent body of methodologically robust evidence they got nothing, and should shut up and sit down.

I wonder if it’s the same 2/3rds who it stated now work as recovery practitioners?

 

[Hoopoe]

The suggestion basically seems to be that people with long COVID are scared of people thinking that their illness is not "real", for reasons such as to not be labeled as "crazy", because it's easier to get disability insurance with a "real" illness, or because if a child has a "psychological" illness, there's more risk of the parent being blamed. I guess they would say that people with long COVID don't want people to recover from psychological therapies because of fear that it would help legitimize those theories.

I do think people with LC and ME/CFS are afraid of others thinking the illness isn't real, is psychological, and so on. But it's not due to prejudice in the sense of being an unjustified fear born out of lack of experience. I think it's the result of experience. Viewing an illness as "psychological" leads to reduced empathy for patients, increased stigma and lower social support. These claims imply that the patients are mismanaging a problem they have control over, that they brought it upon themselves, that it's time for patients to take responsibility and quit bothering others with their personal problems.

The hypothesis that viewing the illness in this way, and the corresponding approach to treating and managing it, leads to improvement, is simply wrong and causes harm. Chronic illness and internal psychological conflicts are two very different things and confusing them leads to problems.

The narrative that the psychological approach is effective but is being refused out of stigma shifts the responsibility away from those making the claims. If those making the claims had to take responsibility, they would have to admit that they do not have reliable evidence for their claims. In science the burden of proof is on those making the claims.

 

[JellyBabyKid]

These claims imply that the patients are mismanaging a problem they have control over, that they brought it upon themselves, that it's time for patients to take responsibility and quit bothering others with their personal problems.

This is so incredibly damaging; especially for people who are already very vulnerable.

How many people have internalised that toxic self blame?

Offering people tools to support themselves would be genuinely helpful, but this kind of framing is the opposite of that.

That you for summarising it for clearly and succinctly.

 

[MrMagoo]

Recovery is Possible

Ah yes, the breakthrough we have all been waiting for folks, social media vibes! Nothing says high-quality science quite like 75 cherry-picked anecdotes from a recovery channel on Youtube, most who are now selling the paradigm, literally not figuratively.

At best it shows that recovery is possible, but we already knew that. In the report, almost half were ill for under 5 years, possibly suggesting chances of recovery are better in the earlier stages, but we already knew that too.

Neither of these observations are suppressed secrets. What matters is which factors lead to recovery, and that is not really gained by cherry-picking stories and lowering standards of evidence.

Featured prominently on the homepage is an apparent contradiction:

“Healing is never ending.” —CFS, recovered after 4 years.

PACE-type logic here, like lowering the required CGI score in the recovery definition because it better "represented the process of recovery". Recovered but still healing? Healing from what exactly, if already recovered? Lingering psychological trauma? Perhaps loss of income now to be regained from selling recovery courses?

(Edit: @Dolphin found a statement which might help explain that: "Some participants who are fully recovered talk about continuing to practice techniques that they had used as recovery tools (such as meditation, breathing techniques or pacing practices) after regaining their health.")

I bet there will be heavy overlap between those who will promote the report on recoveryispossible.info as strong evidence for the effectiveness of mindbody interventions, but also trash the patient surveys of thousands of individuals reporting ineffectiveness from mindbody interventions as being unreliable evidence due to selection bias.



["Recovery is possible" by Sarah Cefai represents a watershed moment in #MEcfs #longcovid. We in medicine have by and large failed these patients. Recovery comes through a self-realisation of agency and then finding help to recover- outside of medicine. The medical establishment and @MEAssociation need to get up to date with the science and what PATIENTS are saying recoveryispossible.info]

Haha @ Paul Garner describing it as a 'watershed moment', in his tweet which only received 10 likes after 7.3K views. What on Earth happened to his entire career as an expert in evidence synthesis? It seems that he just tossed it all aside because of his own personal experience?

That is what struck me about Garner's story. When he was in the earlier stages of lingering effects of COVID, he read about CBT/GET and doubted it. But after being on the road to recovery after pacing, then the mysterious phonecall, he pulled a 180 degree turn and attacked those that previously helped him. All because his own personal experience or belief system changed, not because the evidence-base itself had changed.

People with Garner's qualifications would usually cringe at 75 cherry-picked recovery stories involving some supplement or medication stack promoted on a Youbtube channel with the majority selling those same products. They would howl loudly about quackery and demand randomised-controlled trials to rule out a range of biases.

But here Garner is, boasting about it as if it is the dawn of a new era for patients everywhere, all because it aligns with his experiences and his beliefs. It fits really well with the unofficial motto of the psychosomatic wing of the 'evidence-based medicine' movement who look down on non-blinded trials of drugs or supplements: "Rules for thee but not for me!"

Garner “…We in medicine”
Is he the medical establishment now? I thought they were the baddies and he was a loopy brain goodie?

And yes, we are afraid others won’t believe we are ill - because haven’t some of us thought the same about someone else? Before we got sick?

 

[JellyBabyKid]

Garner “…We in medicine”
Is he the medical establishment now? I thought they were the baddies and he was a loopy brain goodie?

Schrödinger strikes again. Both the establishment and the rebellion

Seems to be becoming quite common in a certain demographic currently

 

[bobbler]

This seems to be taking another 'lurch' as I've just had come up on fb the following:

which is from Dr Eleanor Stein,

(I thought I recognised the name from DoctorswithME: https://doctorswith.me/me-cfs-top-tips-for-doctors/ and there is an MEpedia entry: https://me-pedia.org/wiki/Eleanor_Stein - so I don't fully know what to say and maybe that is better on another thread, maybe it isn't?)


copied text of the ad for those not on fb:

Have you ever met someone who fully recovered from ME/CFS or long COVID?
This groundbreaking study examined 75 interviews of people who did.
Join Dr. Sarah Cefai (author of The Recovery Report), Raelan Agle, and Dr. Eleanor Stein for a powerful conversation on what these 75 people actually did to get better.
We’ll explore:
• The single most consistent finding that preceded recovery
• The strategies people used (and why they still use them)
• Why being told “there’s nothing you can do” is so harmful
• How hitting rock bottom can become a turning point
This is your chance to hear the real stories and ask your questions live.

Wednesday, August 26, 2026

9:00 am Pacific / 10:00 am Mountain / 12:00 pm Eastern
~90 minutes | Recorded with indefinite access
Free with Live! with Dr. Stein membership (or pay-what-you-can)
Hope is possible. Recovery is possible. Come hear how.
Go to www.eleanorsteinmd.ca/cefai to register.

 

[bobbler]

There are also presentation slides on this ad, or other promotion materials - which might be worth putting to compare to what is even in the correct sections of the report itself? but they aren't as easy to copy text from


The first of these slides says (my bolding):

"Recovery Report"
"A groundbreaking Study of how 75 people recovered from ME/CFS, long covid and other related illness"

"Have you ever met someone who fully recovered from ME or long covid?"

"This study is a summary of interviews with 75 people.
Hear what they did."

"We are very fortunate to have with us Dr Sarah Cefai from the UNiversity of London, author of the study, and Raelan Agle, the interviewer.
Join Dr Cefai, Raelan Agle and me to learn about the groundbreaking never-researched before study of real people did to get better from ME/CFS, Long covid and other related illness"


The first thing that strikes me in that last para of blurb is that it has been happy to not make clear that Dr Cefai isn't a medical doctor but a PhD in a social science. And that the research isn't any type of medical research at all, or relevant as any medical advice at all - it feels it is happily being pitched as that

 

[bobbler]

second slide (their bolding and different side text, NB the same top banners of 'a groundbreaking study are at the top):

"This is your opportunity to hear what methods the 75 people employed in their recovery and also to be able to directly ask

Dr Cefai and Raelan your questions

Some of the topics in the report include:

- what was the single most consistent finding that precedes and accompanies recovery

- what strategies did people use to recover (and why they keep using them)

- why being told "there is nothing you can do" is so harmful

- how hitting rock bottom can be a turning point in taking charge of your health"


So many things to say to this

First of which includes the fact that they have put Dr Cefai's name in big letters front and centre seems to add to my point in the comment above about misrepresentation that the author or this report has any medical knowledge and not clarifying that neither are medical doctors

Second is point 2 of the bullets. in brackets 'and why they keep using them' about how deceitful this propagandic level 'report' is in misrepresenting itself as 'research' when it is happy to pretend that those who are 'saying they keep using them' are actually people 'selling these things' who may or may not have either had the illness or got any better. But have a conflict of interest in that their business relies on selling the recovery story they have - rather than these being research from confirmed patients who were found by medical doctors to have improved

Both of these points I think are at ASA (advertising standards authority) mis-selling level.


The last 2 bullet points seem to confirm that an aim isn't to sell to the poor patients only but are harmful propaganda being sold to those surrounding people who have a serious illness in order to have their supporters, family, colleagues and those who aren't near or dear judge them and treat them badly.

I don't think it is even a point they can use their pretend innocent eyes on to pretend isn't telling someone's dear old mum, boss, GP that being cruel to them is helpful by telling what are in plain speak lies - there is no 'evidence' in the world that is based on "predatory sellers' spiels say it, so it must be 'evidence', and I'm not making it up" in truth these stories could well have been made up first to sell/incite and then those who do that were then 'analysed' as all 'using the same lines' is what the 'research' is.

Sarah isn't honest (its more than an accuracy issue) in her titling of it as about 'patients recovering' rather than 'sellers using a promise of recovery' any more than 'why do sellers use stories of these claims', andthis isn't honest in its description


what is logic in real psychology is that telling the support network/nearest and dearest, those providing and making policies for services to, employers of and so on, of seriously ill people that 'you should force them to hit rock bottom' because of a lie that when the pwme and any knowledgeable medics say there isn't some stupid treatment like that sold thru these websites that 'is something they could have done' to stop/avoid being such a burden IS both harmful and INCITEMENT, also in plain truthful terms that's the word.

As a simple point I know from my science degree in it that the most important thing in relation to suicide (other causes) that makes a difference one way or the other is: quality of people's support network. That's the main thing that comes from the literature full stop. SO attacking situation, situation, situation (and all this started as a tactic exactly when that was the exact message anyone in the area knew) I fail to see as anything but done with such hindsight tbh, the at best irresponsibility astounds me.

It's a political ad putting out these 'ads' as if they are just for conning people out of their money, even if that is one real motivation in order to do so they are also encouraging society to believe harmful lies about very ill people in order to think they 'just don't try hard enough and need 'tough love' ie callous cruelty to force them into harmful programmes'

 

[bobbler]

Slide three (under same header of 'the recovery report' and then the line about groundbreaking study) their bolding:

"You've heard it before: "There's no cure. Learn to manage it"

You've tried the pacing, the supplements and all the appointments.
Good weeks give you hope, crashes take it away again.
Come to this webinar and find out how 75 other people demonstrate that recovery and living well are possible.


The webinar will last approx 90 minutes

5-10mins introduction
20mins presentation
10mins break
up to 55mins Q&A

To me this 'report' charading as research instead of misrepresentative propaganda which has even misreps who its participants are and what its definition is in its own front pages vs what's hidden 30 pages onwards in.

Is being used to try and mislead readers of an advert into thinking the storytelling (in both senses of the meaning of that word) of a group of sellers of unevidenced 'therapies' into thinking that their supposed claims made by sellers are actually the voice of normal, real patients who don't have a conflict of interest/make money off said therapies

"come along and find out how 75 other people demonstrate...."

is very different if you haven't worded the slides and ad so that phrase infers those are people 'just like you' in the sense of having the same illness and not being people trying to sell you something.

NOONE is demonstrating ANYTHING - look at the methods, they didn't check they either recovered or had any of these illnesses, the main criteria was that they wanted to be part of Raelen's CFS recovery website because/and most of them are selling wares. It's just their 'word'/'words' - noone checked anything medical.

If it was honest it should have been titled something like 'Advertising stories/narratives/tales and tactics of unevidence therapy sellers Report: the employing of tales and claims of recovery' THEN it would at least be able to call itself a social sciences research.

I personally think that even from a perspective of an academic position only in the social studies area but a university being dragged in by that 'badge' and job title being leveraged to infer it is even research of that type there should be serious investigations going on here regarding crossed lines that this is research that can be claimed to be 'academic' etc. on this basis.

This being used as marketing with those who did it being the headliners so part of said event makes it very much seem the doing of the report was intended to be used in this misleading way ('one of a series' and 'hashtag #RIPCFS' being suggested for a marketing campaign in the last few pages where acknowledements are made, the list of websites listed after the references which I guess are those who participated? as if they were patients etc?) given the attendance of the author at things like this, the little pretend caveats put here or there as if they cover her back 'its just sociological interest' don't seem true if you then dive into it being used the opposite way and that never mentioned?