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

Nice will also review the evidence on dietary management and strategies such as tube feeding for patients with severe ME, to examine whether its guidelines need amendments.

If that is so, it is a major policy change from Peter Barry's position until now that a review was not practicable - at least as I understand it.

Perhaps some discussion has occurred behind the scenes.

Edit: looking at the article and Sean O'Neill's comment I would be cautious about whether or not the involvement of NICE will be substantive.

It is also disappointing that the ME/CFS action plan is further delayed - even if it does not amount to much anyway.

I also wonder who will be involved in a further working group to look at feeding problems. Everything seems very close to the chest.
 
While Sean recognises as positive that the Coroner has been listened to, he describes the responses as "lacking substance".

He said: “It is a positive sign for ME sufferers that all these public bodies have listened to the coroner and responded to her findings.

“However, the actual responses are lacking substance. There is no sign that anything will be done to tackle the coroner’s main concern — that care provision for people with severe ME is ‘non-existent’ in the NHS. And it is upsetting to hear that the Department of Health’s delivery plan on ME appears to have been delayed again until March 2025 — almost three years after work on it began when Sajid Javid was health secretary.”



I wonder if there will be any measures put in place to assess progress in the issues identified by the Coroner. In her section 28 report, the Coroner said- see page 90 this thread-


"ACTION SHOULD BE TAKEN
In my opinion action should be taken to prevent future deaths and I believe you have the power to take such action.

YOUR RESPONSE
You are under a duty to respond to this report within 56 days of the date of this report, namely by 3rd December 2024. I, the Coroner, may extend the period.

Your response must contain details of action taken or proposed to be taken, setting out the timetable for action. Otherwise, you must explain why no action is proposed."

I wonder if the MEA to whom the Coroner's report was sent will respond.

There is no reference to timetables in the Times report.

The print copy of the Times, p29, also contains this article.

Apology for some lack of clarity. I am struggling today.
 
Adam pwme said:
Mentions the response to the prevention of future deaths report
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Anna Gregorowski as one expert (most replies from seemed to assume BACME are the specialists we are short of which confused me and she suggested there were just ‘gaps’ in provision where people don’t have ‘those specialist services’ - yet is hospital care better or worse where a BACME person or service has been involved?)

there was a sense of suggesting the issue was just the rollout being too slow rather than it being safe,useful, the right thing and people

and Chris Ponting (who thank goodness was able to make the point about potential and past reported harms from services like GET)

I’ve been concerned for a while tgat the call for specialist inpatient would get twisted into services that people dread even more being rolled out by those who were involved in the old stuff putting their old wine in new bottles or pretending the problem is someone else or other services rather than coming from errant advice they may still believe in just changed the name of slightly etc
 
BACME plan - to assert we need more of the (same, old, bad) services. What on earth was the BACME chair doing be touted as an ME expert on national TV? This is terrible. The press are being given a deceptive fiction story about NHS services for pwme, a damaging story for ME patients.
 
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That was a very good piece. The interviewer is sympathetic and knowledgeable about ME/CFS. I endorse @bobbler's thanks to @Chris Ponting, and the concern about the BACME input. Although Anna Gregorowski was saying that ME/CFS is not psychological, she was suggesting that the problem is just not enough specialist services (and a need for better services related to nutrition in people with severe ME/CFS). There was no admission that it is BACME's members who have contributed substantially to the stigma and poor care of people with ME/CFS.
 
Lou B Lou said:
BACME plan - to assert we need more of the (same, old, bad) services. What on earth was the BACME chair doing be touted as an ME expert on national TV? This is terrible. The press are being given a deceptive fiction story. A damaging story for ME patients.
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I agree that it was fiction with respect to BACME, with the implication that they have been battling heroically in an underfunded NHS to try to care for people with ME/CFS. However, I don't think it was damaging. If BACME have to front up and say 'no, it's not psychological' and 'we need better nutrition support for severe ME/CFS' perhaps that is the important thing, with the admission of guilt being less important.

Of course many of BACME's member will go on thinking that it is psychological, or some strange non-dual category somewhere between psychological and biological where 'it's not the patients fault' but it still can be fixed by the things these therapists know how to do.
 
What struck me about the specialist services for ME discussion is it stands to reason they don't deserve to be considered specialist services for ME if they don't know enough to go to a severe ME patient rather than try to make her come to them in a hospital and cause the patient a relapse.

What I liked was this was self evident from the discussion of the problems ME patients face, before that came up. The whole discussion was framed from the patient perspective.

Also liked how Chris dropped the mic not once but twice, "graded exercise therapy is harmful..." and "as Anna has said, this has previously been thought of as a psychological disease, it is not..."

I got the impression Anna Gregorowski was trying to walk a tightrope between reactionary influences in the NHS and the reality patients face. I think reality is winning, because of the terrible consequences of not facing it, which I hope we can avoid in future, ASAP.
 
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https://twitter.com/user/status/1866244681471856888


Tweet:
Anna Gregorowski (https://bacme.info/people/anna-gregorowski/…) seemed to imply that there were already specialist services available for severe ME. That simply isn't true. It also seems that NHSEngland is working with BACME on their "stocktake" audit of services.




https://twitter.com/user/status/1866247320125211104


@actionforme
and
@MEAssociation
are seriously asleep at the wheel if it's BACME that are guiding NHSEngland through this process without input from clinicians who actually have experience of severe ME.





https://twitter.com/user/status/1866436888518598671


It explains why Stephen Powis used the term "CFS/ME" is his statement. I suspect their 'stocktake' will be more 'whitewash'.


.
EDIT Add.
Pertinent Tweet by Paul Keeble on this twitter/X thread:


https://twitter.com/user/status/1866436352369434646



"The NHS is never going to accept anything but it's own to guide this process. BACME was created so they could continue using exercise and CBT under the guise that a charity was involved. It's a false flag organisation it's defending the BPS goals."

.
 
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I suspect the clinicians involved will have considerable experience of severe ME/CFS. Anna Gregorowski certainly does. She deals with severe young people.

I think the problem is a bit different. There need to be people involved who understand reliable evidence.
 
Jonathan Edwards said:
I suspect the clinicians involved will have considerable experience of severe ME/CFS. Anna Gregorowski certainly does. She deals with severe young people.
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Are there any clinicians in the NHS with considerable experience of severe ME/CFS? Most of us who are housebound/bedbound never see a doctor for our ME/CFS, because there'd be no point - and we may otherwise simply not encounter doctors because we're too ill to go and see them and they don't come to see us. Where would any of the clinicians get this experience?
 
Sasha said:
Are there any clinicians in the NHS with considerable experience of severe ME/CFS?
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Yes, but mostly managing children/adolescents. The unit at UCL largely deals with severe cases I think. At least in the past patients have been regularly admitted for treatment. At least one of the severe cases in the news has been under the UCL unit in the past but once adult there are no arrangements.

There are also 'neurogastroenterologists' who are very familiar with severe ME/CFS and feeding problems but it is hard to find out exactly how they operate.
 
Jonathan Edwards said:
Yes, but mostly managing children/adolescents. The unit at UCL largely deals with severe cases I think. At least in the past patients have been regularly admitted for treatment. At least one of the severe cases in the news has been under the UCL unit in the past but once adult there are no arrangements.

There are also 'neurogastroenterologists' who are very familiar with severe ME/CFS and feeding problems but it is hard to find out exactly how they operate.
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Things may have changed but UCL did not have a good reputation with parents / carers .
@Tilly may have better insight
 
Amw66 said:
Things may have changed but UCL did not have a good reputation with parents / carers .
@Tilly may have better insight
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Yes, that was my point. Having experience of severe ME/CFS maybe isn't really what Lucibee was looking for in that tweet. What is needed is insight into the reality. How they see things in UCL paediatrics now should be part of discussion when I present a Divisional Seminar in January.
 
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