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

I prepare to stand corrected but my understanding is that the term ME was designed to cover what appeared to be a new epidemic neurological illness with signs suggestive of encephalomyelitis. ME/CFS has no signs suggestive of encephalomyelitis. I think it is a straightforward fact of history but am happy to be proven wrong.

It has nothing to do with whether or not the original acute illness was related to ME/CFS - it clearly was in some people. But apart from a very few elderly people nobody now has ME/CFS that has followed this putative acute neurological syndrome - which in the end was never clearly enough defined to continue to exist as a medical entity.

 

I think it is of interest that the Canadian Consensus Criteria of 2003, which are pretty sensible and practical, are criteria for 'ME/CFS'. The International Criteria that came later, and which require 'neurological' and 'immune' features on the basis of a speculated pathology yet to be found, making no real sense are for 'ME'.

 

It would no longer qualify as acute..

I'm not clear that this is accurate.

I'm sorry, I have trouble with this. Could you clarify?

Im not trying to be quarrelsome. It's simply that your position seems to dismiss any possibility that a newly discovered process, or stealth pathogen, or unknown agent, might be behind ME/CFS, and might remove it from the table - when symptoms may dovetail with such a theory.

 

It doesn't remove it at all. But it would indeed be wild speculation to suggest that whatever particular virus cause apparent neurological signs of encephalitis at the Royal Free in 1955 was some how lurking about causing the unrelated illness of ME/CFS in people coming on after completely different, and in some cases well documented infections.

 

Wild speculation?

Don't wish to unpack all that, but why would it? Do you imagine we'd be able to distinguish it or even infer its persistence or lack of, no less prove it?

All I am suggesting is that just because we fall short of certitude, doesn't mean we should rule possibilities out.

 

X/Twitter exchange between Dom Salisbury, Todd Davenport, Binita Kane and Sarah Boothby:

DS: I don't think we know enough about ME to say with certainty that it is caused by e.g., 'problems with oxygen delivery to the tissues.' Such strong statements set us up for ridicule if they turn out not to be true.

SB: Not if they are true. It was true for Maeve, for example. The clinical studies are not being commissioned, due to the usual obstruction from @The_MRC which has ruined so many lives for too long. Institutional neglect at state level is more than government alone can change.

TD: Taking bets that the average BBC Breakfast viewer hasn’t the foggiest clue about the difference between hypoxia and impaired peripheral oxygen extraction, nor do they care. You know what they think? Fatigue is a personality issue and ME is not real thing. Priorities, people.

BK: Thanks Todd. Quite tricky to talk about impaired aerobic energy production and an inability to produce sufficient energy on demand in short a sentence, under the bright lights of live TV aimed at the general public….!

DS: I'm not criticising you @BinitaKane — you did a good job. My point is that we have to tread carefully and learn from past mistakes. It's perfectly possible to communicate well what the illness entails and how it affects people, whilst acknowledging uncertainties about.....

causation and pathophysiology. 'We know ME is a debilitating energy-limiting condition, and there's evidence of X, Y, Z... etc'

BK: Agreed Dom. I’m always happy to be challenged and to learn. Thanks for sharing your thoughts.

DS: Thanks, and thanks for your advocacy.

SB (reply to DS): You must also give ground. Patient confidentiality is as sacred as it gets & I can promise you we KNOW WHAT WE ARE SAYING. It is not rhetoric. It is founded in the evidence @The_MRC & @NIHRresearch refuses to fund because the establishment is dominated by those who cannot learn.

 

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? The idea that our pleas for help being disregarded because we said 'ME' not 'ME/CFS' could ever be fair is absolutely ludicrous.

We do not have an accurate name for this disease. Whilst I agree that ME/CFS is the best name for the time being, modifying an inaccurate physiological name with a trivialising, offensive and inaccurate syndrome name does not somehow make it more legitimate. Patients/advocates should not be punished for not adhering to it precisely.

It is your colleagues who have slandered and harmed and neglected us. We should have been taken seriously decades ago. We should not have to beg.

You may be right in practical terms, but in terms of fairness I think this is way off base.

 

Still looking longingly at SEID over here.

 

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.

 

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

 

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.

 

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.

 

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?

 

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.

 

I will try at some point.

Currently I am struggling to even follow my saved threads on the forum - in a generational ‘sandwich’ position as a joint carer, whilst still trying to stay within my own physical capacity