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

A short piece on Channel 4 news

https://twitter.com/user/status/1819482003126771923

 

They seem generally to be laying low during this--except, of course, for Alastair Miller's piece last weekend. Other than that, I haven't seen any of them pop up, and it doesn't seem like the journalists covering it have felt the need to seek out their opinions. Perhaps that's a change--that the knee-jerk instinct to gauge their response and add it to the debate is not so knee-jerk anymore.

 

They know the tide has turned and that’s why the best they can do is that “I’m an agreeable chap, let’s all join together” bit by Miller. Whilst they try to get their teeth into Covid and FND

 

Yes but they’re all becoming eligible for a free bus pass and pension

 

And so are lots of ME sufferers. We are the same age as Wessely/White/Sharpe etc. But we have no private pension to look forward to. We are just praying to not be placed in care homes with managers and staff brainwashed by the 'they must exercise' ideology.

What the hell was the point of all our years of doing advocacy - when we will very soon be old, sick and helpless, and abused in care homes for the elderly? Hmm? And what are our so called Charities doing about it? NOTHING!

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If there is actually atrial going on it would be useful to know. But if this is just open label treatments then there is the usual problem of expectation bias. 'Feeling better' is ultimately what matters in ME/CFS, and we have nothing else to measure, so I am not sure in what sense it would be 'more than'.

 

Yes, but that applies to things like rheumatoid arthritis, which isn't one thing either. When we do controlled trials we build in to the design the assumption that some will benefit and some not.

But if you do not do properly controlled trials there is no way of knowing whether any of the improve,emts are actually due to the treatment. And if you do properly controlled trials and a proportion benefit that shows up. What the ME rituximab trial showed was that although several people thought they were getting benefit, in a properly controlled trial nothing at all showed up - making is reasonably certain that nobody was benefitting from the drug.

 

‘Feeling better’ is no doubt a good thing, and I would be happy if I could feel better all the time, but that is not enough. I could ‘feel better’ a lot of the time if I could get enough rest and avoid PEM and avoid anything else that might trigger PEM such as being upright or light or sound, as could everyone with ME who is not at the severe/very severe end of the spectrum.

Presently my life is a continuous struggle to find a balance between not feeling awful and to actually live some form of life.

What I really want is to be able to do more and not to be made worse by activity and hypersensitivities. I suspect if I ‘felt better’ without having a treatment for PEM, I would increase my activity until I crashed. I suspect ‘feeling better’ by itself would be a dangerous gift, that for me activity levels and activity patterns are ultimately the primary measure of improvement not ‘feeling better’.

 

What I mean by feeling better is all the time. 'PEM' is just not feeling better after exertion. That counts. So yes we have to find a way of dealing with what stops people feeling better all the time but to me that is not PEM. PEM is the result of whatever that is.

If the people taking IV saline are going to work and crashing that is clearly not a recommendation for IV saline.

 

Maybe a better phrase would be “doing better”?

I think overall I am currently “doing better” than over the winter.

Yet I’m not necessarily “feeling better” as I tend to run at a certain “feeling okayish” level and adjust how much I DO to not “feel worse”.

Likewise any “feeling better” I experience, tends to get used to DO more, so in the end I pan out at a similar level of “feeling okayish”!!!!

Does that sorta make sense.

 

As a person living with ME, I have to disagree with your statement that 'feeling better' is ultimately what matters.

To me better function, that my body is actually functioning (a bit closer to) properly, is much more meaningful to me than 'how I feel'.

I can still 'feel' absolutely shite as in fluish, nauseous, knackered and as if I've been concussed and/or hit by a bus or three, but if my very severe OI for some reason is less bad, meaning I can for example walk to the bathroom and brush my teeth without fainting, or walk to the kitchen to get a glass of water without getting horrendous presyncope that forces me to immediately lie down on the floor to avoid fainting, or if it allows me to sit up in bed long enough to eat a meal -- that ultimately matters much more to me than 'how I'm feeling'.

To clarify, from my perspective it's about my body actually functioning better (less badly). This is what ultimately matters more to me, and it's also what literally helps keep me alive. I still feel absolute shite, no change there. But days or moments when my body is functioning a little bit better than other times, that's what makes all the difference.

Also, in my case it's actually easily measured with a regular blood pressure monitor.

I'm obviously less severely affected than Maeve was. I'm just speaking from my own experience.

I've never had the chance to try IV fluids. But using for example compression stockings and oral rehydration fluids like Resorb do make a (small but noticeable) difference for me both in function and on the blood pressure monitor's data, especially when measuring orthostatic blood pressure.

I've seen return to work used in studies to measure function and treatment effects, that's why I picked that as an example (instead of listing reported symptom related improvements) in my previous comment when referring to the improvements people have anecdotally reported.

And yes, obviously we are all hoping the doctor prescribing the IV fluids that I mentioned in my previous comment will publish on it. He has done and published scientific studies before, so we will just have to keep our fingers crossed and wait and see. It's still early days.

 

A thoughtful piece in the Herald telling the story from Melvin Ramsay to Edina Slayter-Engelsman to Maeve: "The Scottish doctor who tried to change attitudes to ME".

Media coverage seems to have grown noticeably more sympathetic recently.

 

That’s an excellent article indeed.

 

Rather not well enough to work (yet), but IV saline at least seems to work, must be worth trying then. Isn't that what @MelbME is plans to try?

 

This we need more than a reduction in symptoms to regain some semblance of living rather than just enduring.

 

I was an inpatient in the ME/CFS ward in Romford, Essex, under Prof Findlay in 1999. The were some positive aspects and some negatives. It was a far better environment for someone with severe ME/CFS than any other NHS hospitals I was aware of at the time. The staff were mostly kind, sympathetic and understanding but there was a fair bit of CBT bullshit too. But it was CBT-lite. The inpatient service lost funding and was shut down some time in the 2000s I think.

One of my frustrations with the service was that it never used the opportunity to do any significant research. As far as I’m aware they didn’t even do any long term follows up after patients were discharged.

Lots of people have called for public inquiries over the years. I wrote to the chair of the Health Select Committee via my MP several years ago. In retrospect I realise that I was naive at that time* and it would probably have been counterproductive. I’m not sure when the right time would be but probably not yet.

*Like many advocates I made the mistake of overstating what was known about the pathophysiology and I got some of the counter-BPS arguments wrong.

 

I am interested as to what you would do differently and if you are able to share your original letter? As we have a whole new batch of MP's to get in touch with so there are a lot of "blank slates" to potentially contact.

 

The Observer letters: ME: we need more funding and more research

Two responses to Alastair Miller's awful opinion piece a couple of days ago.

Alastair Miller claims there have been “years of well-funded research” into ME (“Maeve Boothby-O’Neill’s harrowing case highlights clashing NHS narratives on ME”). We disagree. UK research funding for myalgic encephalomyelitis has been demonstrably insufficient compared with the high symptom burden and with other diseases. From 2015–2020, just £6m was committed in funding for ME research through the National Institute for Health and Care Research and UK Research and Innovation, compared with £53m for Parkinson’s disease and £22m for multiple sclerosis.

(...)

Karen Hargrave and Emma Gore-Lloyd, Founders of #ThereForME

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Alastair Miller is correct to say that the NHS needs to provide rapid access to multidisciplinary clinics where diagnosis can be confirmed and guidance on management provided. This was recommended in the new (October 2021) Nice guideline on ME/CFS. However, some of the key recommendations on management, especially the removal of graded execise therapy, were opposed by the Royal College of Physicians.

(...)

Dr Charles Shepherd, hon medical adviser, ME Association; member, Nice guideline committee on ME/CFS​