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

[InitialConditions]

As well as drawing on interviewees from the USA in addition to the UK, they did not solely consist of people with ‘CFS’ but also included ‘related conditions’. I may have missed it but as no confirmation of diagnosis was required and what was meant by related conditions doesn’t seem to be specified, we have no idea how many of the 75 actually had what we would recognise as ME/CFS and how many had different unspecified conditions, which would make any speculative figure even lower.

Raelan doesn't care what the condition is. It's all the same thing to her. Sometimes the diagnosis isn't even explicitly mentioned. Often the interviewees are self-diagnosed.

EDIT: I've also seen several videos where the interviewees got ill during covid so they call it long covid despite absolutely no indication that a covid infection caused the illness.

 

[Sean]

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.

This. They have had to construct a completely false 'narrative' to try to sell their psychosomatic fairy tale, to the point of just making up brazen lies about their critics.

There is no world in which this is simple honest mistake on their part. As proved by the fact that when the errors and inconsistencies are pointed out to them they refuse to address them honestly, and instead sink into DARVO and ultimately a refusal to engage.

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!"

Their shameless hypocrisy is off the charts. They have demonstrated repeatedly through their quick-off-the-mark critiques of biomedical studies that they understand perfectly well what robust methodology looks like and how it operates, while also flatly refusing to accept that it should apply equally to their own claims, and granting subjective self-report measures an unquestionable status.

It is one of the more damning pieces of evidence against them.

Ha! I had assumed it wasn't you.

Yes, I was pretty sure anybody familiar with me on S4ME would have realised that. But just seemed prudent to make it explicit for those newer to the game, to save them any confusion.

 

[JellyBabyKid]

they understand perfectly well what robust methodology looks like and how it operates, while also flatly refusing to accept that it should apply equally to their own claims,

While seeming completely baffled that this is completely unequivocal. Clear exceptionalism.

 

[MrMagoo]

I agree with your points overall, but not this specific one. It is very common in the US, at least--I can't speak for Canada--to use Dr as an honorific in a professional setting, like a panel discussion, for anyone with a PhD. No one expects you to say, oh, by the way, they're not an MD. If the issue involves an academic topic, I would not assume someone referred to as "Dr" is a medical doctor.

It’s becoming a real issue in the UK that people with a doctorate are giving what sounds like medical opinions, opinions on whether you should use meds, on socials.

The Venn diagram of Dr (not an MD) large socials presence and dangerous grifter has a dangerous core.

I think we should adopt the US thing of “MD” to separate them

 

[Jonathan Edwards]

I agree that when the focus is health and there is a wider audience the label is deliberately abused. In an academic context it wiuld just be Agle or Tuller or Ponting since everyone is Dr.

 

[Jonathan Edwards]

I agree that when the focus is health and there is a wider audience the label is deliberately abused. In an academic context it wiuld just be Agle or Tuller or Ponting since everyone is Dr.

The giveaway is "Dr Cefal and Raelan".

 

[rvallee]

Advocates have walked into that problem, by promoting the 5% recovery statistic without nuance.

The majority of people with persisting symptoms after an illness, including symptoms with an ME/CFS pattern, recover. We know that recovery is the norm in the first few years, it happens without any particular treatment. People who recover during that time are not exceptional, they are normal.

If we don't acknowledge that, then people like these brain retraining promoters will co-opt natural recovery to their own ends.

Better yet would be to point out that this data has been intentionally corrupted by systemic refusal to record and follow diagnoses. We could have known this for decades, and it's only because of ideological fanaticism and dereliction of duty that we didn't. This was intentional failure with premeditated intent. What we have begged for decades would have made that obvious to everyone, it's only because we have been cast aside and neglected that the data are this poor.

But even then, Long Covid has made this completely clear and those recovery rates are still massively abused to promote useless treatments despite falling short of natural rates. It really doesn't matter what we say or don't, not when we are dealing with people who have no shame making a conjoined "recovery is possible" (5% of millions definitely not being 0 making that absurd) and "we have to listen to the patients, they have been silenced far too long" marketing campaigns.

There is literally no combination of things we can say and do that will not be twisted to promote the popular myths, there is no point in scolding people for being failed, this is entirely the fault of the medical profession and its institutions.

 

[rvallee]

The denominator in the percentage is actually at least as big everyone who had persisting ME/CFS-like symptoms, 2 or 3 or 6 months after an infection. That is a lot of people. It's a way bigger number than the current number of people with ME/CFS.

If I had to guess, I'd say that 10% of people with glandular fever, covid-19, Q fever and the other illnesses that seem to trigger ME/CFS have persisting ME/CFS-like symptoms at 3 to 6 months. But, by 3 years after infection, it's probably well less than 1% of infected people.

So, it's 57 people out of a very large number of people, the 10% of people who had persisting symptoms after an infection, most of whom also recovered but don't make a living shouting about it.

One way to put this into perspective: much smaller odds than winning lottery jackpots. Literally, far more people have won the maximum prizes on national lotteries every single year than this. This is appallingly fraudulent.

 

[MrMagoo]

Well from some Facebook comments it appears Dr Eleanor Stein had made a big error, stating that Dr Cefai was an MD and now it’s been corrected!

 

[MrMagoo]

Just wondering whether we can find 75 people who have ME/CFS similar who are happy to be interviewed about brain training not working, then I just need somebody with a a PhD to help publish a paper on it.
Any takers?

 

[MrMagoo]

A few months ago, I started my own informal "study" of success stories found on Raelan's channel. I gave up after about 7 stories. But I had also watched 12+ recovery stories on her channel years ago so was familiar with some of the tricks in the "recovered" community. For context I've had ME 16 years.

For the 7 stories I looked at for my project, I took notes as I watched their interviews with Raelan, trying to answer key questions. Then I did a deep dive into the "recovered" person's social media posts (often I was in the same online groups, and I searched their name and read years-old posts to try to reconstruct their history), went to their website if they had one. One "recovered from ME/CFS" person was sick only 18 months, and nowhere was this stated on the video on Raelan's channel -- I only found that info from the recovered person's website. I also contacted a couple of them and got responses as to their current state of health.

So if the people doing this study haven't looked at old social media posts, they're not getting the full picture. Because some of those old posts differ significantly from what the person said to Raelan. Like the timeline is different, or they forgot to mention to Raelan they started some new treatment at the same time as the brain retraining. In one case, I discovered from an old FB post one person was going to yoga 3-4 times a week during the time they claimed to be very ill, which is not at all what they described to Raelan. And I assume it will differ from what they're telling this researcher in their interviews.

Excellent investigating skills!
I guess this is the problem with self-reported narrative stories.