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

I agree that a patient is entitled to tell a doctor they have ME if they prefer. My concern is in use of the term in advocacy in bidding for support, and largely just because I think it is going to mean you get none - regardless of the justification.

But I don't think doctors will necessarily understand, because people mean very different things by ME. If a patient told me they had ME I would have to ask what they meant by that and who told them they did. If they told me they had ME/CFS I wouldn't need to ask what it meant but still might want to know who had provided it. If I had ME/CFS I would think it very risky to tell a doctor I had ME - and I wouldn't even know what it was I was hoping to convey.

Amongst the doctors, scientists and patients I listen to (or read) I come across all these different meanings for ME right now:

1. A rare neurological disease that can cause brain inflammation and paralysis (there are several physicians and researchers who believe this).
2. A disease of impaired energy production.
3. A codename doctors give hypochondriac patients to keep them happy.
4. A specific syndrome with PEM, as in ME/CFS.
and all sorts of other variants .

Some studies suggest that about four out of five people told they have ME, or indeed ME/CFS maybe, don't have number 4. So actually a doctor assessing someone really has to do their own assessment unless they know who gave the diagnosis and know it means 3.

And in the context of a bid for resources, much the same question arises for someone like me looking at plans. I want resources for people with 4. I don't want resources to be diverted into activities based on speculative theories, whether they be of neuroinflammation, lack of oxygen or psychology, unless of course they involve good quality science and trials. If I see a bid for resources for ME/CFS I know that I am dealing with people who are familiar with the complex clinical problem of long term disability. If I see a bid for resources for ME I wonder if the people bidding really have much familiarity with the problem - which ME do they mean?

 

I asked my (helpful) GP to change my notes to say that I have ME/CFS instead of CFS. She said the only options on her system were CFS or ME, so she changed it to ME. I was surprised ME/CFS wasn’t an option.

I think ME/CFS is the least bad option at the moment but I don’t feel strongly about it. I just look forward to the day when we know enough about the pathologies so we can come up with some useful names.

 

For 4.?

 

sorry yes I edited the list and forgot

 

I imagine that many people when saying "M. E." are simply further abbreviating "M. E. C. F. S."

Nobody says "N. A. S. A." they say "nassah".
Nobody says "S. I. D. S." (sudden infant death syndrome) they say "sidds".

If the letters in ME/CFS were more favourable, people would use whatever the equivalent of "meckfuss" might be.

 

I think it is complicated because it wasn't Ramsay who coined the ME term.
Where I think the confusion pivots is that although Ramsay recognised the chronic illness he seems to have assumed that it was the extended clinical pattern of a unique initial illness - which somebody else called ME.

The problem is that the charities, at least to an extent, adopted Ramsay's position that ME/CFS was a specifically neurological disease with maybe 'encephalopathy' if not encephalitis. Otherwise they could have called themselves PVFSAssociation or Action for PVFS.

I think charities might change. MEA may disappear when Charles retires from it. AFME has shown flexibility already. The current system doesn't work very well because the medical profession do not take ME charities seriously - which may be a major reason why they do not get funds coming in. Changing that is not easy but it badly needs to change if the charities are going to be anything more than on the fringe

 

Thanks of the note, Hutan. Hopefully the discussion has run its course.

I realise this is a confusing and uncomfortable area. Perhaps I would just add that on Thursday I took a tube train to exchange debate here about advocacy in the wake of Maeve's inquest, for chatting to the rheumatologists at a teaching hospital who should be joining that advocacy. They had not heard of Maeve, or of microclots, or really any of what we discuss. Someone said 'yes, chronic fatigue syndrome and Long Covid are similar in many ways: difficult conditions to manage' - likely oblivious of the 2021 NICE Guidelines and the fact that nobody is even attempting to manage because referrals are no longer accepted by rheumatology.

The gulf in communicating the significance of Maeve's death to the people who we need to do something about it is hard to comprehend. I think it is worthwhile picking through the things that might contribute. Maybe we are no further forward, but maybe some of the people present at the inquest will see things on this thread that they might not see otherwise. Next Thursday I intend to propose doing a Divisional meeting presentation on Maeve's life, death and inquest.

 

Thanks @Adrian .
I should have used quotes , it's the text of the tweet .

 

Another piece in the Times: "The Times view on the chronic fatigue syndrome inquest: Respect ME":

https://www.thetimes.com/comment/th...fatigue-syndrome-inquest-respect-me-xnsrdrxx3

Archived version: https://archive.fo/ASFLE

 

Sarah Boothby has posted re inquest on X , linking to her Facebook page post.
Post copied below

"Reporting of Friday 27 September 2024, the final day of the inquest, has been disgraceful. Professor Anthony Hemsley was the only witness. He spoke for several hours to three detailed and comprehensive statements, made between August 2023 and September 2024. He had very positive and encouraging messages from his hospital, the Royal Devon University Hospital Trust (RDUH) in Exeter, for everyone with very severe ME at risk from malnutrition. None of them were reported in the Times. Indeed, it appears neither Archer nor O'Neill have understood most of what they have heard, nor seem to have read much of what they have had in disclosure.

I did not ask for an inquest after Maeve died so that one person who was never involved in her education, health or care, should use the opportunity to generate fear and grief about her entirely preventable death at 27. Far from it. The inquest has heard how, since Maeve died, Professor Hemsley and his team overcome the internal contradictions between clinical guidance on preventing malnutrition in adults and the NICE guideline on ME/CFS (NG 206). All the people who wrote NG 206 are equally responsible for that error.

Neither O'Neill nor Archer have understood the risk to other patients in their summarising of what went wrong for Maeve. Her death would only have been preventable prior to the work done by Hemsley at the RDUH NHS Trust if she had been force fed (as others with very severe ME who lose the power of speech have been elsewhere). Force feeding in very severe ME is extremely dangerous. It is not life threatening but it delays recovery for years, because of the nature of ME.

Maeve only ever had one diagnosis. First it was CFS. Then we discovered her illness was, actually, ME. She only ever had ME. We already knew that NHS UK has no services for anyone severely or very severely affected by ME or CFS. We knew this as soon as Maeve was diagnosed, 9 years before she died. What we did not expect was that she would be refused tube feeding when she needed it. This refusal was because of patient safety.

The inquest has found that Maeve's death was preventable. There was one doctor involved very breifly in her care who knew it, but he did not work in the NHS. Those who do work in the NHS did not have the authority to change national clinical guidance until after Maeve died, because Maeve had died.

Professor Hemsley and his staff have worked very, very hard to prevent further deaths. Based on what they have learnt about ME since the inquest opened (October 2021) they have designed entirely innovative treatment plans, that are as safe as possible, exclusively to prevent malnutrition in very severe ME. These plans have been tested with several other patients at risk of death from malnutrition - throughout the UK - they work and they include IVF at home, in the community.

Hemsley has also tried to have these plans commissioned by NHS UK, so that every hospital would have instant access to them as soon as they are needed. His request has been rejected at every level. He said, ‘I have tried, I went to the very top in asking, and I will not stop trying - as I would try for any patient.'

Without strategic leadership at national level, future deaths can only be prevented if individual patients know they must apply directly to the head of patient safety at the RDUH. The person to contact there today is Donna Seccomb. These plans are not safe without a full risk-benefit analysis for each individual patient and a full assessment of their home circumstances. A high level of nursing skill is required before it is safe to be discharged home. Home is the best place for any person with very severe ME. Most families will want to take on that responsibility. Hemsley and his team have made that a real possibility.

Maeve and I never experienced a doctor responsible for Maeve's care who thought ME 'was not real' as HMAC Archer repeatedly claimed in court. That was Sean's allegation. He did not speak for me, or for Maeve. He speaks only for himself. The country needs better from its leading newspaper."

ETA link to Xitter post
https://twitter.com/user/status/1840845880590549490

 

Are these NICE feeding guidelines?

Or is this about NICE ME/CFS guidelines?

 

I find it hard to make out what is being said here. The NICE Guideline in place when Maeve died was the 2007 Guideline. I doubt it said anything about nutritional support. The subsequent guideline in 2021 doesn't say anything very specific other than that ME/CFS patients may need support. I am not sure what 'contradictions' are being suggested.

 

She does say "since Maeve died" and references NG206 specifically. NG206 (NICE 2021) simply refers on to CG32 for management of malnutrition, leading with "Monitor people with severe or very severe ME/CFS who are at risk of malnutrition or unintentional weight loss". That doesn't seem internally inconsistent to me.