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

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'.


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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.
 
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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I haven't looked recently but they are well known to be wolfs in sheep's clothing. You have to look deeply into how they use their words/phrases and what they mean, as many will tell you.

I think the bigger problem is BACME and their roll out by the NHS, along with FND clinics which seem to be in every hospital and pain clinics. Both have a determined hold on ME supported by the board of the NHS England. I have made a few slides about this and how this all impacts on the care of those with ME. I have pout them on X and am happy to share, but it is too much to put on here I think.

In general terms the health and care of young people with ME is declining and the outcome for them is scary.
 
Tilly said:
I think the bigger problem is BACME and their roll out by the NHS, along with FND clinics which seem to be in every hospital and pain clinics. Both have a determined hold on ME supported by the board of the NHS England.
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This.

Far as I can tell the same people are still in the driving seat, and their underlying views and therapeutic prescriptions are fundamentally the same as they ever were. The only difference I can see pre- and post-NICE is slight tweaks to their marketing spiel, and sometimes not even that much.
 
Sean said:
This.

Far as I can tell the same people are still in the driving seat, and their underlying views and therapeutic prescriptions are fundamentally the same as they ever were. The only difference I can see pre- and post-NICE is slight tweaks to their marketing spiel, and sometimes not even that much.
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Spot on, it is all in the words they use and how they then use the meaning. I think @Jonathan Edwards is right "Multi disciplinary" and "complex multi system disease (or anything like those words) can mean complex mental health only or FND in other words. It is something I am thinking about a lot; how normal words like "functional" can end up meaning "conversion" without the understanding of healthcare providers and commissioners.
 
Tilly said:
I think the bigger problem is BACME and their roll out by the NHS, along with FND clinics which seem to be in every hospital and pain clinics. Both have a determined hold on ME supported by the board of the NHS England. I have made a few slides about this and how this all impacts on the care of those with ME. I have pout them on X and am happy to share, but it is too much to put on here I think.
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This is an important issue. The mismatch between what is actually known about our condition and what the majority of professionals in the UK supposedly supporting us believe, and the bizarre language games they play to maintain their unevidenced beliefs.

You could put the slides on the BACME thread or if you thought they would form the basis of a useful discussion start a separate thread just for them.
 
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