Thread 11: To feel disappointed after reading this in The Observer about the author and her husband from The Salt Path book and film?

[DisappointedReader]

The Observer The real Salt Path: how a blockbuster book and film were ...
2nd Observer https://observer.co.uk/news/national/article/the-salt-path-whats-in-the-book-and-what-the-observer-has-found
3rd Observer https://observer.co.uk/news/national/article/the-salt-path-the-truth-behind-the-blockbuster-book-video
4th Observer ‘I felt I was being gaslit’ – the landlord who helped Ray...
Raynor Winn/Sally Walker's statement Raynor Winn
Thread One www.mumsnet.com/talk/amibeingunreasonable/5368194-to-feel-disappointed-after-reading-this-in-the-observer-about-the-author-and-her-husband-from-the-salt-path-book-and-film?
Thread 2 Thread 2. To feel disappointed after reading this in The Observer about the author and her husband from The Salt Path book and film? | Mumsnet
Thread 3 https://www.mumsnet.com/talk/amibeingunreasonable/5369425-thread-3-to-feel-disappointed-after-reading-this-in-the-observer-about-the-author-and-her-husband-from-the-salt-path-book-and-film?
Thread 4 https://www.mumsnet.com/talk/amibeingunreasonable/5370609-thread-4-to-feel-disappointed-after-reading-this-in-the-observer-about-the-author-and-her-husband-from-the-salt-path-book-and-film?
Thread 5 Thread 5: To feel disappointed after reading this in The Observer about the author and her husband from The Salt Path book and film? | Mumsnet
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husband-from-the-salt-path-book-and-film?
Thread 7 www.mumsnet.com/talk/amibeingunreasonable/5373425-thread-7-to-feel-disappointed-after-reading-this-in-the-observer-about-the-author-and-her-husband-from-the-salt-path-book-and-film?
Thread 8 www.mumsnet.com/talk/amibeingunreasonable/5375023-thread-8-to-feel-disappointed-after-reading-this-in-the-observer-about-the-author-and-her-husband-from-the-salt-path-book-and-film?
Thread 9 www.mumsnet.com/talk/amibeingunreasonable/5376712-thread-9-to-feel-disappointed-after-reading-this-in-the-observer-about-the-author-and-her-husband-from-the-salt-path-book-and-film?
Thread 10 https://www.mumsnet.com/talk/amibeingunreasonable/5378984-thread-10-to-feel-disappointed-after-reading-this-in-the-observer-about-the-author-and-her-husband-from-the-salt-path-book-and-film?

New posters welcome. It would be helpful to read at least the four Observer items above before posting. There are currently 10 items on The Observer website The real Salt Path | The Observer

To all - Please be extremely cautious when it comes to naming or implicating people and addresses not in the public eye or with no direct connection to the story, and around the understandable health speculations, especially where details are unclear or still emerging. Please do not engage with visitors who seem to have their own agenda and seek to derail. Avoid @'ing and quoting them as - from experience - this will only encourage them back to the threads. We have done amazingly well together for ten very interesting, very serious and very silly threads so far. I can't be here as much as I'd like so all help with keeping our discussion walking along in a healthy and civil fashion is very welcome.

No saltiness. Keep to the path.

Does stolen fudge taste better?

That's how I see it as well, 2 pages to the 2015 letter and 1 each for 2019 and 2025.
On SW's website the chronological order of the letters is messed up, I think that can cause confusion.
As for the (in)completeness of the 2019 one it's hard to tell, there is no signature so there might be another paragraph on a 2nd page.
But the content goes from description of prior diagnosis to current symptoms to planned procedures, so I don't see what would be left to cover?
I'm mostly amazed that she published that letter at all, considering that it proves the CBD diagnosis was very much in doubt and his condition was very much stable with no terminal prognosis before TWS and LL.

Sorry, yes I hadn't noticed that letter was 2019 and had assumed it was 2015. 'Some years ago' could mean 2015 or 2013. It does suggest quite a gap since this consultant had seen TW.

Interesting. I've just read it again in light of your comment. I do see what you mean. He also talks about 'travellers' (plural) on TSP just before the 'et al!': 'It certainly inhabits the travellers on 'The Salt Path' as they journey on...' and hasn't mention any other compelling cases up until that point. As he has just mentioned RW by name, I still suspect he is talking about TW with the 'et al!'. It is the aside and use of an exclamation mark that hints to me of familiarity.

I think this is a key element of the deceit. The books being published maintain he is terminally ill when the medical letters and the appearance of Moth clearly shows otherwise. And the fact no one has seen a 2013 letter with a CBD diagnosis makes me believe it was a deliberate deceit from Day 1.

Indeed. As the statement on the PSPA website goes on to say:

We were shocked and disappointed to learn of the allegations made about Raynor and Moth Winn by The Observer this weekend. We know the article has taken everyone by surprise and has made people affected by Corticobasal Degeneration (CBD) and Progressive Supranuclear Palsy (PSP) feel angry, let down and eager for clarity.
Raynor and Moth worked with many individuals and organisations since their first book was published, including PSPA. We received the family’s need for support, and desire to raise awareness of PSP & CBD in good faith. Whilst we are thankful for the awareness opportunities their story has provided; too many questions currently remain unanswered. Therefore, we have made the decision to terminate our relationship with the family.

To me 'et al' sounds less familial than technical, doesn't it just mean 'and others'? If it refers to TW, it sounds like it presents him as a co-author.

I still don’t understand the representation of the CBD diagnosis process in TSP.

In TSP, Moth is told that there’s no way of knowing he has CBD when he is alive, as there are no ways of testing for CBD, so the doctors will only know for certain if he has it at post-mortem.

However, we know CBD is a diagnosable condition, as posters on here have experience of it and a CBD patient was interviewed on the Observer Slow Newscast podcast episode released earlier this week.

How can it be then that Moth can’t be reliably diagnosed with it but others can?

@Fandango52 is it a diagnosis of exclusion? Like, they rule out Parkinson’s and early-onset dementia, maybe other things, and speculate that it’s got to be this other thing. Maybe there is a specific pattern of symptoms and progression in confirmed cases of CBD that most people follow?

Perhaps he is. There is something which has been bothering me about that from a podcast and I'll have to dig it out to properly explain what I mean.

Yes, 'et al' would be something a reviewer of medical books and research papers would commonly use about co-authors, just without the exclamation mark.

The IH could be the secretary's or the typist's initials. At least that's how it was done when I did that kind of job in the NHS.

@Fandango52
If I was cynical I might assume they were setting the stage for a possible withdrawal from the CBD narrative - an emergency exit in case too many people were questioning why he is still alive and well. But then the multi-book deal for the repeated deterioration-salvation narrative was too lucrative to take that off-ramp in time...

Lawyer here. While SW’s account of the final court hearing with the unfair judge declining to admit critical evidence introduced late in the day never rang true for me, District Judges (lowest rung of civil court judge in England and Wales) are in fact assessed as Sir or Ma’am in court. Circuit judges (next level up) are assessed as Your Honour and High Court judges (next level still) as My Lord/My Lady. A final
mortgage possession hearing would typically be heard by a District Judge in the county court.

I think he is referring to Moth but I don’t think the exclamation mark indicates familiarity. He’s just making a not very funny science journal joke by using “et al”. So very unfunny that he needed to add an exclamation mark to make it obvious it is meant to be a joke 😂

Presumably, the reviews are usually about academic books. He’s just mimicking the language he would be using in reviews usually 🤷‍♀️ Referring to RayMoth as Raynor Winn et al (as you would if they were scientists who had written a paper or book) in contrast to then saying that their case is not “scientifically irrefutable” 😂

It’s just a light hearted review.

I've been following this with interest because my Mom had CBD. It's by diagnosed by first ruling out all the other testable conditions that isn't similarly. The striking symptom is the way it hits one side of the body and then progressed from there. With my Mom, she woke up one day with a single frozen finger. That then slowly progressed to her hand, then arm, all the way to her shoulder. They spent years trying to treat it as a muscle problem. Her balance then started to go.

It was properly diagnosed after reviewing two brain scans around a year apart. You could see an increase in dead white matter. This was made it a definite diagnosis.

It can be said that it can only be fully diagnosed after death because it's caused by misfolding tau proteins in the brain. You can only see those when the brain is sliced and under a microscope. But the symptoms + no other cause + evidence from brain scan makes it a definite diagnosis.

It does not get any better. It isn't treatable. My Mom died 10 years after that frozen finger and lasted longer than anyone thought she would once she became locked in. It wasn't diagnosed until about 4 years of having that frozen arm.

Is a 7 day court judgement/ultimatum before repossession by bailiffs feasible? I think the law on repossession may have changed over the last 12 years.

@ImNotShpanishImEgyptshun Thank you so much for sharing that with us.

I'm sorry to hear about your mum. Thanks for sharing. With regards Moth and the brain scans, I don't think any seem to have come back with white matter changes, it just refers to clear scans. One later letter says about repeating scans and writing after the, but this letter does not seem to have been included.

There was something about a scan or test for dopamine levels though. Depleted? Not sure if that is diagnostic or not.

I’m not sure how it’s diagnosed.

My confusion was more about the fact that I don’t understand why others have received a definite diagnosis of CBD and Moth still hasn’t.

Everything points to the fact that Moth’s diagnosis is atypical (it’s slow-developing etc). However, he still hasn’t received a definite diagnosis.

Considering that RW and Moth started investigating his symptoms in 2015 (if we just go by the medical letters released by RW), you would expect more concrete evidence by now (10 years later) of the condition.

I’m confused at the discrepancy between the released medical letters and RW’s representation of his diagnosis. It’s very, very bold to definitively say he has CBD when the letters don’t offer any concrete evidence for that.

I doubt that the Observer will be able to get to the bottom of this, as medical records are private, but it just doesn’t add up.

I know I’m not saying anything new, as this has been a big question for most of us since the Observer’s initial investigation came out, but it’s been on my mind, as I’ve been wondering why the diagnosis process for others would be so different to Moth’s and why he still has no clear answers about his condition.

Bit of a diversion, but can anybody remember the dates of the Minack theatre/Iolanthe date debate in one of the earlier threads?

I think the dates for the performance at the Minack in 2013 were 16th-21st Sept. The excerpt from the diary extract below suggests they spent the following night camped out near Lamorna Cove under a "full moon" which suggests 19th Sept and thus 18th Sept for the night they watched Iolanthe at the Minack.

I’m so sorry about your Mum ❤️ the diagnosis and symptoms sound agonising. Really sorry.

I think the dopamine may be related to Parkinsons, the medication is a dopamine replacement. One of the things they tried with Mom just to make sure was to give her the Parkinsons meds to see if they did anything, which they didn't so made the diagnosis more definite.

There are other things which can cause white matter death, such as heart failure, TIAs, etc. But they don't present with the other symptoms. I'm not sure if that damage can be reversed.

There may be negotiations going on to appear on the Piers Morgan show. He did get to interview the alleged stalker from 'Baby Reindeer'. Or perhaps they'll pop up on some other television or internet show.

And Moth walked the 26.5mile London Marathon in 2023 in 8hrs 17 at just over 3mph and the 120 mile Thames Path in 2024, nearly 18 years after first symptoms. Yes, very atypical!

My timeline notes
2013 16 Sept - Minack performed IoIanthe

True. It would be odd. Yet still plausible hence the mystery. We simply don't know.