Thread 14: 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's original exposé: The real Salt Path: how a blockbuster book and film were ...

The 13 Observer items currently available on their online 'The real Salt Path' page: The real Salt Path | The Observer

3 more from The Observer:

‘Hope is extinguished’: CBD patients respond to Salt Path...

The real Salt Path | The Observer (The Slow Newscast)

‘We thought: it can’t be the Salt Path couple – they’d ha...

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?^

Threads 2-11: Links all in the OP of Thread 12

Thread 12: https://www.mumsnet.com/talk/am_i_being_unreasonable/5384574-thread-12-to-feel-disappointed-after-reading-this-in-the-observer-about-the-author-and-her-husband-from-the-salt-path-book-and-film?

Thread 13: https://www.mumsnet.com/talk/am_i_being_unreasonable/5386458-thread-13-to-feel-disappointed-after-reading-this-in-the-observer-about-the-author-and-her-husband-from-the-salt-path-book-and-film?

New posters joining us in the genuine spirit of our civil discourse welcome. It would be helpful to read at least some of the Observer items above before posting. There are currently 16 interesting items on The Observer website and linked to above.

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 thirteen 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 our usual reasonable and respectful fashion is very welcome.

Are we all becoming Hyperglycaemic from all the fudge?
Have shares in Cadbury's gone up?
Can we remain cheerful in the face of such shameless glumwashing?
Will I need to fill up with much petrol this thread for the drive-by scoldings?
Will our Chloe H get exclusive interviews with the disgruntled peregrine, tortoise and Hollywood rabbits?
What has our Simon A got to say about this, preferably in verse?

Keep to the path. No saltiness. May the fudge be with you.

If it's all the same to everyone, I'm just going to sit here and imagine JI dancing naked in the rain. You can talk among yourselves for a while...

And is anyone else feeling really really sorry for any author whose debut 'walking in nature' book got snapped up by publishers on the back of TSP etc being such a success, but who are now being grilled about the sprained ankle they sustained as a five year old in 1983...?

I have to disagree that SW not stating TW has an indolent form is irrelevant. Do you also think it is irrelevant that Raymoth are telling people he has 2 years/3 months to live? And is what they are repeatedly choosing to tell people about his short life expectancies Raymoth's fault or someone else's fault?

In fairness to CH, she has consulted and been informed by a number of specialists. Ten, I think?

I think this could be the beach between Zacry's Islands and Newquay (very close to Newquay). RW writes about cooking mussels in the pan here and camping on an ancient promontory fort nearby. I checked maps and Google images and it seems to fit that location (looks like Zacry's Islands are in the background). Something that might actually have happened!

Raymoth at LE on 15 Sept 2013 (?) with her IG comment that it was a very bad selfie.

I’m still agog that they were fraudulently claiming working tax credits.

I don’t think they were. I used to get WTC and they were assessed annually, IIRC, so they may well have qualified while running the holiday let business and that would run until the next year when they would have to update with their new situation. It wasn’t like UC where you have to report your earnings each month and the amount you get can be adjusted every time.

hopes she hasn’t misremembered how TC worked, how embarrassing for the Pedantry Correspondent if she has

@TurraeaFloribunda
there was speculation on the last thread about Moth having a brain tumour because SW writes that the consultant talks about an MRI and “brain mass”. The consultant will have been referring to an MRI to see if there is any loss of brain mass due to CBD. It is sometimes possible to see shrinkage in parts of the brain in the brains of people with CBD.

This is the very last chapter of Landlines, and my memory of it is that the consultant at that appointment talks not in terms of shrinkage, but of a mass showing in a previous scan that's now not there on this scan. However, I'm out today and don't have my copy with me (!) and I would want to be sure of that. I'll check when I get home later and post then.

I've commented before, though, about how that whole passage presents the consultant in question in way that's totally out of line with anything I've ever experienced in a hospital consultation (and I've had a fair few). Saying 'what do you think you'll see? What would you like to see?' is game show host behaviour, not what consultants do in a serious appointment. For that reason alone I personally think a lot of this is fabricated for narrative purposes. Any actual consultant would be calling their colleagues in to look at this unheard of clinical finding and thinking about how soon they can get it published in a medical journal.

I'd also add, for now, that the 2019 letter that RW shared mentions doubts about the diagnosis - that his stability means 'it may be an even more unusual disorder'. In other words, the clinician is speculating that it's so 'atypical' as a form of CBD that it may be something else altogether. I think that alone makes space for discussion.

😂😂

@catwith69lives I think the bags could be cheap Tesco ones. Often bulkier equates to cheaper and synthetic fibres and supermarkets usually have cheap deals in summer festival season. What I would question is whether they were "paper thin".

TBH, I think The Observer’s coverage of Moth’s illness has been a bit below the belt

I think what is below the belt is presenting someone's illness as being much more serious than it is, causing feelings of guilt and false hope in genuine sufferers and gaining an awful lot of money and positive attention from it.

If the diagnosis had changed or was in doubt then that should have been dealt with honestly, even possibly joyously. I have experience of such a situation. Instead Raymoth doubled down over 3 books, a major film, numerous interviews and personal appearances, a fourth book in the pipeline and then the rebuttal statement. Even some sort of residential wellness retreat was planned for next year.

I'm not saying the gloves are off. Our discussion here should remain reasonable. I am saying the discussion is justified and in the public interest.

The PSPA/CBD charity acted quickly to part company with the Walker/Winns and to issue a statement. I hope that this whole debacle has at least raised awareness of these terrible conditions.

I'm grateful to CH and The Observer for shining a light on it.

These are screenshots of the book (I don’t have my copy of LL to hand either)

There are two things going on in that passage:

1. the recent Datscan showing a normal reading, when the previous one was abnormal
2. "the sizeable brain mass shown on your recent MRI scan" - which sounds like a thing that has been newly found, not one that has disappeared. The doctor then describes this as "a very different result" and shortly after that the description of the actual scene stops and a lot of reminiscing starts.

That led me to the conclusion that this is a sort of disguised hint within a cliffhanger that although all seems well, it might not actually be so - and we do know that Moth is still presented as very ill in the following book, so this can't be the miracle cure scene that ends the whole story.

And to be absolutely clear, I am talking about events in a largely fictional narrative here, not someone's true health situation, because that is not what these books are about.

The book is supposed to be about the Coast to Coast Walk which I think is quite some distance north of that Winter Hill?

So either she takes a detour, or it's another instance of her annoying people by misusing a geographical term in a book title that actually refers to something completely different (salt paths are really historical inland trading routes) 😁

Thanks @AlertCat for those screenshots and @Hyenana for spelling out what's there. So this is comparing two different types of scan, as well as an old and new version of the DAT scan. But it does refer to 'a sizable brain mass' on the MRI which is the bit I'd remembered.

The scientific thing you'd do next if you got these apparently unthinkable results, would be to re run both scans. Because the first thing to check is that those results are valid and replicable, and that a scan hasn't been wrongly carried out in some way that's led to those results.

I would love to know what On Winter Hill was planning to say about all this. Narratively Moth 'needs' to have what its blurb suggests, ie a setback. But even by the time of Landlines the pattern of terrible health scare followed by miraculous recovery has become difficult to sustain.

Oh, I forgot it was your source - didn't you say you could not guarantee for his reliability at the time?
He could of course be right and RH wrong, but with him being anonymous to everyone but you I personally would not rely on him.
But maybe @FurryHappyKittens could add the 2007 date to the timeline as an possible alternative to RH's version?

Yes I can't guarantee his credibility. I asked some follow up questions about why TW left his role at the NT and whether he had a botany degree, but I never got a response.

I cannot understand why the Walkers have not asked their neurologist to make a statement to the press. They have openly talked about the fact T/M has CBD, built a very successful writing and poetry reading/Gig Spanner career on the back of this diagnosis as well as the film. In several interviews, Jason Isaacs talks openly about how Moth told him he couldn’t go to the loo on his own, and in a Landlines this intimate detail is repeated. They have not held back.Sally has appeared on television talking openly about CBD and they also fund raise for the charity so it is not a secret or something that needs to be hidden. It would put all the speculation to bed in an instant if their neurologist gave a statement confirming and dating the CBD diagnosis as well as explaining the brain scans in Landlines, and why walking helped T/M when others like John find it wears them out. As the neurologist who spoke to CH says,T/M has had this for 18 years and it would be a wonderful case study that neurologist would be interested in.
I also seem to recall that Bill Coles questions Sally about the end of the landlines book, but she never replied to explain what was going on with T’s health. Didn’t he feel confused because she had written the brain scan showed an improvement but T/M had told Bill not to expect him to live beyond Christmas?

I’m also glad CH and The Observer have shone a light on this and I’m also grateful to you for starting the thread and guiding it to maintain reasoned, insightful discussion.

in the decade I’ve been around on MN, I’ve never been so invested in a thread. I think this is because although the thread is essentially about this specific case, the issues thrown up by it resonate so much in current times. We’re living in a post-truth era. The #bekind mantra of recent years, while having good intentions, has resulted in people feeling stifled from speaking the truth. Other people can behave appallingly but we sometimes feel pressure to just be nice rather than calling out wrongdoing. And of course homelessness, and perhaps even more, housing insecurity, is a massive issue these days. Hundreds of thousands of people live with insecure tenancies with extortionate rates. An entire generation is unable to get a foothold on the housing ladder. So to see a couple who were not only home owners but also running a holiday let business and owning property in France, claiming to be victims when they lost their home through one of them stealing money and taking out a loan to avoid criminal charges …. then going on to make millions of pounds through lying…. Is it any wonder people feel angry?

@PullTheBricksDown

I would love to know what On Winter Hill was planning to say about all this. Narratively Moth 'needs' to have what its blurb suggests, ie a setback. But even by the time of Landlines the pattern of terrible health scare followed by miraculous recovery has become difficult to sustain.

That's why I think there might be a twist with a terrible new disease entering the scene.
And to continue the speculation, maybe then 'Moth' needs to be flown to some specialist hospital in the US or Australia or wherever, and 'Raynor' can't accompany him for some reason (lots of handwaving here), so that's why she goes off walking all by herself, not because she doesn't care about him anymore?

But unless an original draft of OWH turns up somewhere, we'll never know.

Thanks, I had already found it and posted a rather snarky review about it yesterday at 21:33 - you even gave a ❤ to that post 😉

But seriously, their take on the story was so ignorant and arrogant it makes me despair...

Whatever Moth has, whatever illness (now practically conclusively decided not to be CBD), surely should be worth investigation if walking has helped him so much? Even if it's a version of CBS that's so indolent it's practically on the sofa, then if distance walking really HAS helped in any way, then someone should be doing some form of investigation into whether this might be of help to others who have similar symptoms/diagnosis?

Why are there no neurologists jumping up and down and demanding to look at Moth's scans and set up some kind of double blind programme for helping those with the same diagnosis (assuming they know what it is)?

The fact that nobody is, and that nobody has even posited the idea that extreme exercise might be used to mitigate symptoms in sufferers of (whatever it is) makes me wonder just what they've all been thinking that Moth actually has.

Well, we know Tim was perfectly able to do film PR and go to screenings this year so it would be hard to spin that yarn of a new terrible disease requiring urgent treatment. Though I suspect the heart condition would be introduced.

Embezzlement is not murder but it is a serious and disturbing crime requiring planned deception against those who have placed implicit trust in you. It's not 'oops soz about that'. I wouldn't want anything to do with someone with a history of embezzlement. Especially someone who was doing this as a mature woman.

@Hyenana an MRI to see if there is any loss of brain mass is standard for CBD. I think we can be sure in the context that that is what the consultant was referring too. Plus I’m sure SW would have got a whole new story out of a previously undiagnosed brain tumour 😂 He is talking about brain mass not a mass in the brain.

@DisappointedReader I think the book would have caused just as much damage by giving false hope to CBD sufferers even if SW had said he had a slow moving form of CBD so it is irrelevant in that sense. It is the claim that walking has reversed Moth’s symptoms that has caused the damage. PRH needs to take some responsibility for not checking whether her claims about neuroplasticity and the normal DaTscan are scientifically valid.

CH asked 10 neurologists whether it is possible for someone with CBD to survive 18 years. They all said no. Note none of them suggested “indolent CBD”. I suspect because it’s not a diagnosis anyone has been given before…

I would be surprised if there was not a diagnosis of some kind before 2015. Moth had been having in depth neurological tests since 2011. It appears that Parkinson’s had been ruled out by 2015. CBD is an atypical Parkinsonism. I think it is likely the neurologist will have tried Levodopa to rule out Parkinson’s before arriving at a diagnosis of CBD (Parkinson’s responds to the drug, CBD doesn’t). If there were a diagnosis before 2015, as I have said before, I doubt it was of indolent CBD because it would have been too soon to know that the disease was slow moving and I’m pretty sure no one was ever diagnosed with that prior to Moth!

TBF, there is a potential medical explanation for Moth being told incorrectly that he had only months to live (based on something he said in an interview), which would also explain why the allegedly normal DaTScan was ordered, but I don’t want to share it and give SW ideas! 😂

Moth appears (from the letters) to have been seen by the same consultant at a specialist hospital over many years who is still standing by his diagnosis of CBS in the 2025 letter. The normal DaTscan is very strange but the consultant hasn’t changed his diagnosis 🤷‍♀️ I think it’s likely his interpretation of the conversation about the normal scan might be very different from SW’s account…

TBF, he does consider it could be something different but there really isn’t a good option it could be. As I understand the letter, he is considering whether Moth has a previously unseen genetic cause for CBS/CBD. There is a genetic link to CBD.

I think everyone is pouring over whether MothRay have lied about Moth’s ill health but I think it more likely that the exaggerations and (potentially) lies have been about his recovery.

People were speculating about Moths health before the Observer article. Raynor Winn has put her husband's health issues out there in books and interviews. Presumably we were all allowed to discuss his health before this, when we bought the books ?
I too am very grateful to Disappointed Reader for this thread, I have never contributed to a thread before this one. I wanted to call my post in rhyme, Ode to a Disappointed Reader, but thought that might be presumptuous, I'm no Simon A (I don't want a drive by scolding!) I can't stop smiling every time I think of Glumwashing :)