Maeve Boothby O'Neill - articles about her life, death and inquest

V.R.T. said:
Why should the onus be on us to use the precisely correct term to prove we are good little patients and not hysterical secondary gain seekers?
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I think that is an unhelpful way of seeing the argument.

Firstly, I am suggesting that when trying to persuade the medical profession to show some interest and support it is sensible to use a term that might have a chance of being taken seriously - simply because otherwise you are cutting off your nose to spite your own face.

Secondly, the reason for using ME/CFS is not about kowtowing to anyone. It is about signalling that the user understands that what is being discussed is a syndrome and not a 'neurological disease'. There is no neurological disease resembling the Royal Free epidemic around now. There may be some other disease that was also triggered in the RF cases.

Everyone here is aware that the medical and scientific communities have made a complete mess of ME/CFS. Why hang on to a confusion about encephalitis that is part and parcel of that mess? The S4ME community has argued itself out of that mess and has established a level of debate that gets beyond such confusions. The science is about teasing out the processes responsible for a clearly defined syndrome centred on a delayed and persistent exertion intolerance. Even Ramsay's idea of chronic ME, although similar, seems to have been wrong in the detail of fatiguability and flavoured by a belief in muscle abnormalities that have never been confirmed.

SEID was a nice idea but for me suffers from using 'systemic', which means nothing useful, and 'disease', which generates a confusion between cause and effect. When we have some understanding of a cause we can call it a disease. Until then we have an effect - a syndrome.
 
Robert 1973 said:
X/Twitter exchange between Dom Salisbury, Todd Davenport, Binita Kane and Sarah Boothby:
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I think this exchange illustrates clearly just how misleading ungrounded science statements can be. Sarah obviously thinks Binita's statement was justified. Todd seems to agree. But we have nothing to support it other than some CPET studies that if anything suggest that ongoing physiology in ME/CFS is not so very different from normal. Moreover, there is nothing to indicate symptoms are due to lack of oxygen availability as far as I can see. The clinical picture just doesn't fit.

My wife is a consultant radiologist and although she did full medical training has never had any specific interest in respiratory metabolism. Nevertheless, it was apparent to her on looking at the video that Binita Kane was making ungrounded remarks that would look foolish to 95% of physicians. I don't think it will help the chances of getting a specialist centre set up to see this.
 
And this is why it matters .
The crux of the matter has not changed , and without action will not change .
Isla Kidd' s mum on Xitter
https://twitter.com/user/status/1839735064394911833


My daughter Isla had Severe ME & died in May, my younger daughter also has ME, her future looks bleak,no improvements in medical care in sight.
How many more lives have to be ruined ?
#pwME
#thereforME
@wesstreeting
 
JohnTheJack said:
I was diagnosed with post-viral syndrome in 1986 and used that for years, but adopted ME
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Same here, I was diagnosed with post-viral syndrome in 1983, before the 'fatigue' bit was added a few years later to change it to 'post-viral fatigue syndrome', which started us on the slippery slope to making the disease all about 'fatigue'. But various doctors I saw back then did call it ME as well. The name 'chronic fatigue syndrome' had not yet been invented. If anything, post-viral syndrome could be a good name to go back to. ETA: Or maybe ME/PVS. In any case, 'chronic fatigue syndrome' is ridiculous (and subjects us to ridicule) and needs to go.
 
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EzzieD said:
Same here, I was diagnosed with post-viral syndrome in 1983, before the 'fatigue' bit was added a few years later to change it to 'post-viral fatigue syndrome', which started us on the slippery slope to making the disease all about 'fatigue'. But various doctors I saw back then did call it ME as well. The name 'chronic fatigue syndrome' had not yet been invented. If anything, post-viral syndrome could be a good name to go back to. ETA: Or maybe ME/PVS. In any case, 'chronic fatigue syndrome' is ridiculous (and subjects us to ridicule) and needs to go.
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Except an awful lot of us didn't get sick after a virus. I became sick after a hepatitis B vaccine. I saw a survey recently (can't remember where sadly), and was suprised to see that more of the patients in the survey had developed ME after a vaccine, than after a virus. So ME/PVS would exclude all those people.
 
Spartacus said:
Except an awful lot of us didn't get sick after a virus. I became sick after a hepatitis B vaccine. I saw a survey recently (can't remember where sadly), and was suprised to see that more of the patients in the survey had developed ME after a vaccine, than after a virus. So ME/PVS would exclude all those people.
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I've heard of people getting ME after an anti-virus vaccine, which may make sense as vaccines can sometimes give people the symptoms of the virus they've been inoculated against? (And, in the 1950s, some patients got polio from a rogue batch of polio vaccine in which the virus had not been killed.) However, the idea that MORE patients get ME from a vaccine than from a viral infection, is not something I've ever come across. Would it be possible to find out who this survey was conducted by, and a link?
 
Jonathan Edwards said:
I think that is an unhelpful way of seeing the argument.
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Perhaps, but I take serious issue with you saying that it is 'fair' for patients to be ignored for using the wrong name. I'm not really interested in a discussion of the etiology as I broadly agree with you, I just don't think patients should be punished for not perfectly navigating the mess medicine has made of this disease.
 
Sean said:
Won't happen. There is no world in which Wessely will voluntarily give up being the centre of power and attention, and slip quietly into obscurity. It is simply not in his nature. He will be proactive to the end of his days.
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Perhaps. But he has certainly been smart enough to distance himself from ME in the last decade.

If he stays and a biomarker/treatment is found he is going to find himself at the centre of a media firestorm.
 
Spartacus said:
I became sick after a hepatitis B vaccine. I saw a survey recently (can't remember where sadly), and was suprised to see that more of the patients in the survey had developed ME after a vaccine
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The trouble is that surveys offering vaccines as an option will attract responses from those who got ill after vaccines. Their results wouldn't be included in surveys that didn't give it as an option, which might show the most common trigger was something else.

Spartacus said:
Except an awful lot of us didn't get sick after a virus.
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I didn't either, but I don't know my trigger wasn't a viral infection. I only know I didn't have any symptoms.
 
Jonathan Edwards said:
My wife is a consultant radiologist and although she did full medical training has never had any specific interest in respiratory metabolism. Nevertheless, it was apparent to her on looking at the video that Binita Kane was making ungrounded remarks that would look foolish to 95% of physicians. I don't think it will help the chances of getting a specialist centre set up to see this.
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While this might be true, a number of physician also thinks it foolish that obese patients can be classified as undernourished. Physician's finding something "foolish" could just as easily be caused by lack of knowledge and bad attitudes.

Though I'm agreeing with the broader issue of claims being made about our illness that are not well enough funded in evidence.
 
V.R.T. said:
Perhaps, but I take serious issue with you saying that it is 'fair' for patients to be ignored for using the wrong name.
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That may not have been the best wording. What I am trying to put across is that the 'ME' diagnosis was as much based on confusion and bad science as was 'CFS'. And the retention of the ME diagnosis by charities has at least in part reflected a continued confusion with that bad science. There never was a disease called ME, not even at the Royal Free, as far as we know. The medical profession gradual came to a consensus to that effect. We now have a meaningful concept of a long term disabling syndrome characterised by PEM. To be clear that we are talking about that concept it makes sense to use ME/CFS.
 
Midnattsol said:
While this might be true, a number of physician also thinks it foolish that obese patients can be classified as undernourished. Physician's finding something "foolish" could just as easily be caused by lack of knowledge and bad attitudes.
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Yes but I don't think that is relevant to this point. My wife recognised that Kane was making statements that were not likely to be grounded in any evidence and most physicians will do the same if they see the video. Having detailed knowledge of the field I think they would be right. But what matters is that claims of this sort will only alienate the medical world further - whether or not that is justified by the deeper truth.
 
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Some of my bedbound patients have a raised blood lactate at rest, indicating that simply the energy required to stay alive has switched them into anaerobic respiration and oxygen consumption is outstripping supply 2/
is finding reduced lactate thresholds, with patients switching from ‘green’ (aerobic) to ‘red’ (anaerobic) at low effort and heart rate levels - a key cause of PEM/PESE the cornerstone symptoms of ME
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She doesn't give the kind of detail necessary to give an opinion on this, but I would just mention here that mildly elevated lactate levels might well be an entirely normal result of minimal activity after prolonged bed-rest. And there certainly isn't the evidence base to make assertions that a "key cause of PEM" is known; not even close.
The root causes of this still need to be determined - immune dysfunction, mitochondrial dysfunction, endothelial inflammation, coagulation abnormalities, chronic infection or a combination. We need investment into the biomedical research 4/
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Yes, we do. We should also take care not to frighten the ordinary ME patient with speculation.
We start by doing ‘something’ not ‘nothing’ - as outlined in our letter the The Secretary of State, an immediate step is to create a commissioned clinical task force who can pull together treatment standards and guidelines (there are treatments!) 7/
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No there aren't.
 
Charles's interview is sensible. He doesn't raise anything very specific but focuses on the 2021 NICE guideline which seems a good strategy.

Binita Kane's thread is mostly about sensible proposals to get some specialist centres going. The pity is the focus on unspecified treatments when I think at present the key issue is attention to environmental stimuli to allow standard procedures for feeding support to be used to best advantage.

The 2021 Fluge and Bella review does not seem very relevant or helpful. They may not even be thinking along those lines these days. It is mostly about circulatory changes that aren't as yet well documented - just speculations.

The real problem for me with all these theories around metabolism and lactate is that the time course of PEM is wrong for being due to going above a metabolic threshold in the short term. And lactate studies have been done and not much found.
 
If there’s one thing I’ve learned since joining here, it’s to beware of any black/white statements on what ME is or what causes it.

Possible rhetorical question, why are there so many qualified Drs who are confident to say “it’s this” when the research is kind of sketchy? I’m not a scientist and even I’d drop in an “allegedly” when putting forward a pet theory.
 
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