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

JemPD said:
In case its in any way helpful -knowing what the charities put out - there is an MEA leaflet (for your debunking process) New ME Association Leaflet: Is ME a neurological disease? | 19 February 2020 - The ME Association
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Interesting to read that. ME/CFS could probably be argued to be a neurological condition - lots of things like muddled thoughts and light sensitivity would go with that. The only problem is that diseases of the nervous system without any evidence of structural abnormality or failure of specific nerve pathways are normally regarded as psychiatric and Dr Shepherd would not want to give that impression.

The mistake I think is to try and prop up a neurological classification that I am pretty sure arose, even if through a winding path, from the idea that the acute Royal Free illness had local neurological signs indicating specific pathway malfunction.

And there are bits that stretch the symptoms to try and meet that, just as the ICC do. It includes 'atypical seizures', loss of sensation and tinnitus. I don't think atypical seizures are usefully seen as part of ME/CFS. I don't think there is any documentation of sensory loss over and above the common problems many people get from peripheral nerve pressures. Tinnitus is so common it is probably coincidence. It also mentions failure of swallowing but I don't think there is any evidence of a local neurological defect - back to where we started.
 
Sleep and headache disorders are considered neurological & only a small number are attributable to any structural or localisable problem. Some such disorders are considered neurological even when they have neuropsychiatric manifestations e.g. as can occur in Kleine-Levin. There's no evidence of affective or thought or personality disorder etc as intrinsic to the syndrome so no basis to classify it as psychiatric.

"Atypical seizures (i.e. not epilepsy)..." - I'd like to know precisely what they mean by this - presumably they don't mean movement disorders or convulsive syncope - pseudoseizure? We don't want to confuse or conflate ME/CFS with FND. And certainly swallowing difficulties are not the only reason patients might need enteral feeding - I came very close to needing that and have never had any difficulty swallowing. I think there's potential danger in muddling some of these cases up.
 
Apologies for just popping in for that off-topic aspect:

Nightsong said:
Sleep and headache disorders are considered neurological & only a small number are attributable to any structural or localisable problem.
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Good point. I think every medical discipline also deals with non-structural illness/ syndromes -- with or without attaching a "functional" / psychosomatic label to them?

I had some good experiences both with 2-3 neurologists and psychiatrists by the way -- they needed a while but then they realized and accepted that there's nor drug or talking therapy that could help but I qualified for needing appropriate 'pragmatic' support and this is what they provided me with.

Most helpful is my current doctor who's both a neurologist and psychiatrist.
 
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Some clarification:

Sean said:
The problem is not being unable to use muscles in the first place. The problem is that it is painful to use them at the time of use, and there is a price to pay for it later.
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Painful and requiring much more effort than it should.

ME/CFS clearly affects the function of multiple organs and systems,...
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At least in the sense of them being normal and healthy, but being required to operate outside of their normal parameters by some other pathology within the body. Being overloaded by excessive external demand on them for some reason.
 
Letter in the Times.

https://www.thetimes.com/article/times-letters-atheist-age-ushers-in-era-of-anything-goes-vhfj3wq97

ETA - Archive link | PrintFriendly link
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Sir, I strongly support Sean O’Neill’s Thunderer on the tragic loss of his daughter, Maeve, to myalgic encephalomyelitis (ME) and the systemic neglect of this debilitating illness (“Streeting must act to give ME patients the care they need ”, Oct 9). For too long people with ME have been left behind. Two years ago I launched the first cross-government strategy on ME but the final version remains unpublished by the government.

The coroner’s report highlights a lack of research, medical training and care provision. The government must act urgently. There are hundreds of thousands of people affected by ME, many of whom are left without proper treatment and support. Wes Streeting and Andrew Gwynne now have the power to introduce the strategy and give this neglected community hope. Maeve’s death must not be in vain. It is time for decisive action to ensure that no more lives are lost.

Sir Sajid Javid
Former health secretary
 
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Jonathan Edwards said:
Sajid Javid is on message but I am unclear what this strategy is going to achieve.
The Working Groups included nothing about care for the very severe as far as I remember.
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People who know about s/vs ME (such as 25%) were involved in the working group and workshops for the Living with ME stream, and submitted very relevant material.
Have no idea what the final plan will include.
 
Jonathan Edwards said:
I feel as if a huge team of people with all sorts of skills has been brought together to dig for buried treasure but since nobody had a map they may have dug a hole in the wrong place.
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I think that basically is the map for government-driven initiatives.

They never seem to realise it's more effective if people on the ground are persuaded they want to do it, because then they'll make it work within the constraints they have. For a fraction of the cost.
 
Kitty said:
I think that basically is the map for government-driven initiatives.

They never seem to realise it's more effective if people on the ground are persuaded they want to do it, because then they'll make it work within the constraints they have. For a fraction of the cost.
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Perhaps the NHSE ‘nudge’ unit (whatever it’s called) should focus on nudging their staff more than the public. Or maybe they do and we just don’t hear about it! It’s a mysterious entity.
 
MrMagoo said:
Dear god at the end of the Sky interview Sarah looked like she might cry, I hope she’s doing ok with all this media work.
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How Sarah has not broken down weeping multiple times over is……

The frustration that even now after a public inquiry into all the awful details of fatal harm there is no movement towards prevention of harm across NHS services is adding trauma on to trauma.
 
Jonathan Edwards said:
Thanks.
If we on the working groups have no idea, things don't seem to look too promising.

I feel as if a huge team of people with all sorts of skills has been brought together to dig for buried treasure but since nobody had a map they may have dug a hole in the wrong place.
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Love this analogy Jonathan!

Also, gardening and plant therapy recovery, seem order of day in the media.

I would suggest the lead DoH civil servant was unwittingly made to lead us involved in the Delivery initiative....

up the garden path, without a paddle..... thus us winding up on Shit Creek....?
She in turn was 'caste off' after the events elsewhere........

She was too well meaning and empathetic to survive the journey to Delivery...

As for the actual process, and those wretched Miro Boards.......

The whole exercise was a severe testing of patience and resolve.

The plan won't tell us anything new or offer anything meaningful as the key to the coffers is NHS England, who didn't want to play ball...
 
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