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

@Tilly

Please note that Jen was asked:

"Jen, are you medically qualified to make statements like this?"

in response to her statement:

"Now I just saw someone with what looks like an obvious skull base leak."

And consider this post, from August 3:



As a non medic, myself, I would not presume to diagnose someone with a common cold let alone assume the authority to interpret scans or state,"Now I just saw someone with what looks like an obvious skull base leak."

 
Tilly said:
...We should all be working together not enjoying putting advocates down, because for the last 30 years, that is what has held research back, harmed patients and let others die awful deaths.
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I don't see anyone "enjoying putting advocates down" as you put it. I also have a now adult son, sick for 20 years, since the age of 12.

What I do see are legitimate concerns being expressed about Jen's MO on public platforms.
 
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Dx Revision Watch said:
I don't see anyone "enjoying putting advocates down" as you put it and I object to your lecturing tone. I also have a now adult son, sick for 20 years, since the age of 12.

What I do see are legitimate concerns being expressed about Jen's MO on public platforms.
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It's a minority of people but I have seen a few people on Twitter and Facebook putting Jen down. Saying things like she was making it up all along, she's a hypochondriac who likes collecting diagnoses... I have seen some really nasty stuff.
 
Sarah94 said:
It's a minority of people but I have seen a few people on Twitter and Facebook putting Jen down. Saying things like she was making it up all along, she's a hypochondriac who likes collecting diagnoses... I have seen some really nasty stuff.
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My impression is that there are two quite different sorts of criticism going on, very much as there are of the PACE authors. There is abusive putting down and there is legitimate criticism of poor science or ill-informed medical comments. The post from @Dx Revision Watch related to the latter. I think it is a pity that @Tilly then may have given the impression that this was part of 'enjoying putting people down'.

There is no point in trying to get to the bottom of ME unless we attempt to filter out ill-informed material. JenB's post was not lived experience. It was about other people's imaging reports, produced by goodness knows who - doctor's interpretations rather than personal experiences. Out of a billion people on the net there is bound to be one person with Klippel-Feil syndrome and ME. If we want to criticise the medical profession for shoddy argument then we need to play fair.

ETA:Already said!
 
Jonathan Edwards said:
My impression is that there are two quite different sorts of criticism going on, very much as there are of the PACE authors. There is abusive putting down and there is legitimate criticism of poor science or ill-informed medical comments. The post from @Dx Revision Watch related to the latter. I think it is a pity that @Tilly then may have given the impression that this was part of 'enjoying putting people down'.

There is no point in trying to get to the bottom of ME unless we attempt to filter out ill-informed material. JenB's post was not lived experience. It was about other people's imaging reports, produced by goodness knows who - doctor's interpretations rather than personal experiences. Out of a billion people on the net there is bound to be one person with Klippel-Feil syndrome and ME. If we want to criticise the medical profession for shoddy argument then we need to play fair.
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Thank you, Dr Edwards.
 
Tilly said:
We should all be working together not enjoying putting advocates down, because for the last 30 years, that is what has held research back, harmed patients and let others die awful deaths.
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Tilly, My own lived experience since 1982 tells me that in UK it is the hijacking of ME by Wessely and co at the end of 1980s/early 1990s that has held research back, ie. the reframing of ME as CFS. I took part in clinical trials in 1980s that we could only dream of now in UK.

I support all advocacy for ME, there is a lot of great work being done out there, and of course we must challenge the medical establishment who have let all of us down so badly. The issues faced by parents of children of ME is simply abominable.

But we must, all of us, be responsible in turn in our advocacy. There is no room for hyperbole and inconsistency or assumption of a medical authority we don't have. We have to deal with reality, not speculation. We cannot interpret neuroimaging, none of us, unless we are medically qualified in that discipline. I think that is fair to say. It does not look good to be assuming an authority/expertise one does not have and in fact can damage our credibility, IMO.
 
Nasim Marie Jafry said:
I think that is fair to say. It does not look good to be assuming an authority/expertise one does not have and in fact can damage our credibility, IMO.
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Yes. I just posted this comment ...

https://www.s4me.info/threads/the-‘cognitive-behavioural-model’-of-chronic-fatigue-syndrome-critique-of-a-flawed-model-2019-geraghty-et-al.9258/page-2#post-212504

Unjustifiable assumptions is what has plagued BPS ME/CFS research for so long, and has so badly damaged research into ME and caused so much grief to pwME. We, of all people, must not fall into the same trap. Just because we might want something to be true, that is no good reason (indeed it is probably the very worst reason) to proclaim that it must be true, and to proceed as if it is true. Else we are no better than those unscientific researchers that continue to do us so much harm.
 
On a completely different forum relating to a totally different subject, this person made a comment that is so very relevant - and rather creative - so I thought I'd post it here :).
Hal Cooper said:
If I ate a can of alphabet spaghetti and shat out a sentence it still wouldn't be bad enough to describe them
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Jen Brea is holding what looks like a Q&A on Facebook right now. It says people can ask her anything, but a lot of people are asking her questions as if she has medical expertis, about their health and what course of action she recommend they take.
And again she gives her view of what ME is. Which is fine by me if she was an unknown ME-patient and not the high profile (former) ME-patient with a huge platform, and co-founder of MEAction that she is.

I don't understand her reasons for doing this?
 
Barry said:
Yes. I just posted this comment ...

https://www.s4me.info/threads/the-‘cognitive-behavioural-model’-of-chronic-fatigue-syndrome-critique-of-a-flawed-model-2019-geraghty-et-al.9258/page-2#post-212504

Unjustifiable assumptions is what has plagued BPS ME/CFS research for so long, and has so badly damaged research into ME and caused so much grief to pwME. We, of all people, must not fall into the same trap. Just because we might want something to be true, that is no good reason (indeed it is fought fir the very worst reason) to proclaim that it must be true, and to proceed as if it is true. Else we are no better than those unscientific researchers that continue to do us so much harm.
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Yes, we justifiably call out the BPS crowd’s unevidenced beliefs, hyperbole and ‘evangelism’ that have harmed pwME immeasurably. Our status as ME patients is so long fought for and so fragile, we cannot afford careless rhetoric from high profile patients either. Being so passionate in one’s advocacy is admirable, but if one has co-founded a global ME org, one should not, IMO, be so publicly reducing/condensing the entire ME narrative into one’s own experience, a highly unrepresentative experience at that. Let science do the talking, not biased, informal polls on Twitter. it does not look professional.
 
Anna H said:




Jen Brea is holding what looks like a Q&A on Facebook right now. It says people can ask her anything, but a lot of people are asking her questions as if she has medical expertis, about their health and what course of action she recommend they take.
And again she gives her view of what ME is. Which is fine by me if she was an unknown ME-patient and not the high profile (former) ME-patient with a huge platform, and co-founder of MEAction that she is.

I don't understand her reasons for doing this?
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I just watched ten minutes. I am bemused/confused when she insists she had RamsayME - and claims Coxsackieb4 onset. Yet she had v high fever at onset, is documented in film, I think 104, and yet Coxsackie is not associated with high fever. Dr E Dowsett has charted this in Melvin Ramsay’s book. (And JB did not have CBV testing until much later I believe, Coxsackie onset is certainly not mentioned in her film, just v high fever.) I had proven Coxsackieb4 onset, as part of outbreak in west Scotland early 1980s, and v diff symptoms to JB - severe GI symptoms and nausea and chest pain, no high fever. But apart from that, our illnesses seem entirely different in trajectory. Obv we are not all w ME the same, there are variations as in any illness, but I have never recognised the illness JB has described as the same illness I was dxd with in 1984. So it did not surprise me when the root of her illness was found to be mechanical.
 
Trish said:
I think it's pretty pointless and unproductive guessing what someone else's diagnosis might be and why their symptoms change after a variety of treatments. We are not their doctors, and we only have a partial view of their whole medical history.
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Not pointless to me, still ill today, and being part of a documented Ramsay outbreak in early-mid 1980s, the cons neurologist who dxd me wrote the preface of Ramsay's book and worked alongside Ramsay. Coxsackie was a huge part of the jigsaw puzzle for me. It is not associated with a high fever, please see Dowsett's chart, I posted it before, so I think it is allowable to at least suggest JB’s illness was not in fact triggered by CBV4. JB has made much of her v high triggering fever in the past. And is now making a great deal of her recovery from ME by neurosurgery, after new diagnoses of CCI and tethered cord. I really have little interest except she is speaking about it everywhere. Anyway, I am not engaging here more on JB, I have more productive things to do with my time and energy. All I know is the illness I was dxd with has undergone so many criteria overhauls, it is hard to know who has what. Also, worth remarking that Jen is the one who is speaking about her CCI diagnosis ceaselessly, inviting attention and discussion. We are allowed to respond, I think. But it is becoming tedious - the endless JB discussion, I mean.

Thank you. *Edited for clarity
 
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