The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

I am reminded that there are something like twenty MRI research studies in ME, maybe more, and as far as I know not a single case in any of those studies was suspected of having CCI-related injury.

 

see comments on this website:
http://www.thepainrelieffoundation.com/craniocervical-instability/

 

This name-dropping, appeal to authority left me kind of aghast/bemused. Really. The Harvard/Princeton education/connections in statistics certainly don't make me more likely to think her hyperbolic CCI commentary (more) plausible. (FWIW my two brothers have a PhD and two Master’s degrees between them from MIT, Yale and Stanford but that does not 'authorise' them in the least - or anyone - to comment irresponsibly about this illness.) That she would respond to challenges of her CCI commentary by invoking her Harvard/Princeton connections is truly bizarre to me. The appeal to authority is not dissimilar IMO to how PACE researchers convinced rest of world of their unevidenced science around ME.

 

I haven't got a husband who teaches statistics at Princeton, so I guess that shuts me up.

 

I see that Dr Alison Bested is included in the list of doctors who collaborated on this report. She is the Canadian doctor who was responsible for setting up the ME clinic in Vancouver, BC several years ago. I wondered what happened to her after she left the clinic. It appears that she is now practicing medicine in Florida.

 

Just in case anyone thought I was taking a gratuitous cheap shot there, I feel I should explain further. Here is JB's tweet:

Which basically says:

Even though I am two courses short of a master's, I married a clever husband so we don't need to argue about it.

Not only is it ridiculous, but it undermines any feminist points she's made in the past (and she has made many good ones). Reverting to being the wife of a clever man rather than backing up her dodgy use of statistics with sound arguments is just a silly move. We criticize anyone who doesn't back up their "research" with facts and evidence. JB has a tiny sample size of anecdotes and a lot of conjecture. CCI is certainly an avenue worth exploring, I've had whiplash and a couple of other head injuries in my time (who'd have guessed), so of course I'm as interested as anyone else, but the breakneck speed at which JB is leaping to recommendations of surgery should be concerning to anyone. M.E. sufferers who reacted badly to rituximab have had their lives ruined, and any quality of life they may have retained with M.E. further diminished. Responsible doctors should never have peddled it before the trials were complete. Have we learnt nothing?

Some data is more valuable than other data, and Jen Brea doesn't seem to be applying any limitations to the claims she's making, in fact quite the reverse.

 

I think it's fairly clear that the only reason she's mentioning her statistics qualification is because people are questioning whether she knows how to use statistics. She's not saying "I'm doing a statistics course at Harvard, therefore my theories are right".

To me, her statement that "observational data are valid so long as you understand the caveats and limitations" is perfectly reasonable.

 

I agree. But making a perfectly reasonable general statement whilst in practice ignoring all the caveats and limitations she should be observing is what concerns me.

 

I suspect it is meaningless. Data do not have the property of being valid as far as I know. Logical propositions can be valid and inferences can be valid (in a different sense) but not data. She sounds as if she is saying some sort of academic truth but I think she just made it up.

In effect all she is saying data are reliable if they are reliable. And she is saying this in the context of data that are no way reliable. She wants to imply that she understands statistics but she has indicated that she has no idea about probabilities, without which statistics are of no interest.

My impression is that people are bending over backwards to be fair to JenB but there are limits to how far one can bend.

 

Interesting how she only qualified her statistics when she was challenged on them......

I’m disgusted by it all and I cannot support MEaction in anything they do while she has a role in it.

 

Hey, Sarah, I do not question Jen's skills in statistics, but I do question her wisdom in the way she is conducting herself on Twitter wrt ME advocacy. I think we are, many of us with ME, some not on this forum, just very weary of Jen's mode of commentary. Her harmful assumption of a medical authority she doesn't have has already been discussed. As a global advocate for ME patients, and co founder of MEActNet, she seems to have forgotten that the vast majority of ME patients do not have this mechanical issue, that she and a handful of others have (apparently) had, with successful surgery. Yet, she is *unrelenting* in her speculations about CCI and ME. She is devising Twitter polls that are most likely meaningless (IMO), and she suggested not too long ago that pwME with leg and back pain should get checked out for tethered cord (a rare neurological condition that she had). This seems alarmist to me. Myalgia is a primary symptom of ME for many of us, certainly for me. I have had leg and back pain as part and parcel of ME for as long as I can remember. It is classic RamsayME territory (no pun intended). But I am confident in my diagnosis of 36 years - imagine a young person coming across J's tweets, worrying themselves sick about CCI and tethered cord cos 'Jen, the director of Unrest' is putting so much undue emphasis on it. I don't think she is using her platform responsibly at this point. We can't just all roll over and say, Great job, Jen. As Jonathan says, there is a limit to how far people can bend in accomodating her.

 

Note the "we are finding..." and the "We think..."

https://twitter.com/user/status/1184075148489564160


Note again the "We're finding..."

https://twitter.com/user/status/1189676115469553665


https://twitter.com/user/status/1189849438438776832


There was no response from Jen clarifying who is doing all this "finding".

 

I honestly do not understand why the Board of #MEAction are not reining her in on social media. Where is the duty of care, as trustees/directors of a 305(c) registered org?

 

This is just my opinion but Jen Brea is a big girl. As a woman on social media with a huge presence and following she must know that her public musings will come under scrutiny.

There is a line to be drawn between discussion and possibly criticism of those views and ad hominem attacks. Social media can be pretty (unnecessarily and unreasonably) brutal. I really don't see Jen coming into any kind of assaults and if she did I think she's probably up to defending herself.

 

to add . . .

I don't feel we have to handle JB with 'white gloves' when we disagree with her.

 

It screams 'confirmation bias' to me.

 

Well, sometimes she just Blocks those who challenge her.

 

The irony is that JenB does not seem to realise that this is the language of second rate medics and scientists. It means 'I am telling you this as one of the in crowd and the in-crowd believes this...'.

A bona fide medical academic or scientist does not use that sort of language. They present the evidence with credit to who has gathered the evidence. 'We are finding' has become very popular in science journalism, particularly from 'Professors of Public Engagement In Science' but these are the people who dropped out of real science maybe because an early rise to stardom didn't pan out.

In medicine 'we are finding' is pretty much a guaranteed introduction to bullshit.