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

Yes, Great Letter. I am still on version 1.

In letter 1 you write:

"People with ME/CFS are offered ‘curative’ CBT, intended to break them out of the harmful thinking patterns supposedly driving their physical symptoms."

Can you say that without it sounding like we actually do have 'harmful thinking patterns'.

'The designers of the CBT for ME programs wrongly attribute ME patients with having 'harmful thinking patterns' though there is no evidence the ME patients do have such thinking patterns. People with ME/CFS are thus offered 'curative CBT' to break them out of 'harmful thinking patterns' that they don't actually have. ME patients merely stating the fact that ME is a physical illness, as the WHO and CDC state ME is, then gets framed as 'unhelpful thoughts and beliefs' by the Drs who adhere to Dr Miller's view of ME'.


Thats too long winded, but explains what I mean.

 

2nd draft, excellent work. Thank you for speaking up

Possibly add a suggestion to consider the number of comments under the article of people's lived experience.

 

Not a gift link but I think this will work:
https://web.archive.org/web/2024052...np/early/2024/02/28/jnnp-2023-332731.full.pdf

 

Great that you are sending them a letter regarding this! My vote is on the second one, the one which includes “patients who have been harmed by the current treatment paradigm…”. Even though the word current might not be accurate regarding the latest NICE report not supporting CBT/GET? But in reality, for sure the current treatment in hospitals.

 

How about a simple reworking of the “CBT issue”

Yes it’s offered to Cancer patients- alongside medical treatment, however there’s no medical treatment or cure for ME. it’s a false equivalence/disingenuous comparison, especially because until 2021 CBT was being used to treat and “cure” ME

edit- grammar

 

An excellent letter as is @V.R.T. and an effective one.

However (only if you have the energy) I wonder if you might think it appropriate to ‘quote’ and ‘reference’ these comments contained within Jonathan’s paper to augment your point about the dangers to patients of not being given complete information when receiving medical advice.


‘Concern in this area highlights the fact that health professionals may not appreciate that giving advice on care, when reliable evidence for that advice does not exist, is a form of misrepresentation or deceit. In practice, recommendations based on psychological analysis have been most associated with distress through challenge or perceived coercion. These are ethically unjustifiable in the absence of any documented evidence base, especially if they involve going against patients’ wishes or any form of coercion.

Legal precedents relating to the need for informed consent to include an explanation of the evidence base for diagnosis or care include Montgomery v Lanarkshire Health Board (https://www.supremecourt.uk/cases/docs/uksc-2013-0136-judgment.pdf). Patients are entitled to be given the scientific evidence base for a change in diagnosis from ME/CFS if the new diagnosis involves causal attribution, whether psychosocial or biomedical. Patients must be told that there is no reliable evidence for challenge-based/confrontational approaches being effective. Equally, treatments based on immunological, vascular, or metabolic concepts should only be offered with an explanation of the lack of reliable evidence.’

 

Re. Dr Miller . Is everyone persuaded that L-C is ME?
M emphasises symptoms as basis for diagnosis, observes disconnect between tissue damage and symptoms in much long - covid and similarity in symptoms with ME and assumes that is adequate to label L-C as ME. Based on symptoms seems an impregnable argument.
But - sorry to point to a pet obsession again - sarcoidosis fatigue often is not apparently related to tissue damage, not necessarily reflected in functional tests is very real, very inhibiting -disabling and has many features where symptomatically imo you can't get a cigarette paper between it and PEM. But one test on active sarcoid showed no 2day CPET effect and in post granulomatous cases immune shifting to TH1 is noted whereas (views may have changed) TH2 shift was touted as prominent in ME.

I am the last one to want to leave patients with poorly understood conditions without an umbrella, for all sorts of reasons, and if the choice for L-C is CFS?ME or no diagnosis I would advocate for the former. CFS/ME + Sarc or rather than sarc is a more complex matter, but is the L-C biology matching the CFS/ME stuff adequately to back up conflation of diagnosis is the basic question?

 

Thanks for writing the letter, @V.R.T., it's looking great.

Couple of minor suggestions:

Furthermore, Miller claims that patients with illness such as cancer are treated with CBT, and so its use in ME/CFS is par for the course. This twists the truth. People with cancer may be offered CBT in order to cope with their illness. People with ME/CFS are encouraged into ‘curative’ CBT, intended to break them out of the so-called harmful thinking patterns supposedly driving their physical symptoms.


Not sure about these, but I'll offer them anyway:

As someone whose ME/CFS went from mild to severe after being convinced by clinicians my condition was psychological and I should treat it with exercise....

Thank you so much for doing this.

 

Thank you everyone for your feedback.

Unfortunately I already sent the letter so I can't include any of it.

But it means a lot and I should have waited longer for feedback.

Word limit was 250, mine was 289 but I couldn't cut it down anymore.

Hopefully they publish but just glad I got it done.

Final draft attached.

 

This was Wessely and his acolytes' position in the late 80s. Their ideology has since completely dominated in the form of narratives that ignore reality, resulting in millions of lives ruined. Their keep reiterating this BS narrative all the time, and it's all a lie. What they want is to continue dominating the narrative, away from a reality that was obvious for a long time and has been completely exposed by Long Covid. It's so repetitive that some of them, Sharpe and Pelosi I think, pretty much literally re-published the exact same empty rhetoric a few decades apart about a "new narrative".

I absolutely don't accept that these quacks are trying their best. They are hostile opponents and there is no overlap between our goals, they are as fully mutually exclusive as astrology is to astronomy. Their success is our death and the needless suffering of millions. Our success is a minor inconvenience to them, would simply accelerate them being irrelevant. There is nothing to bridge here, and this position is insane considering how much harm it has already caused.

This quack has the shamelessness to argue that Maeve's death could be a positive legacy if... the quacks continue to dominate with the clashing narrative that caused her death. The exact same narrative that the doctors who let her die are using to excuse their failure. This is an insane position, these people are completely disconnected from reality and are unreachable.

 

A post with data from the NHS clinics showing Dr Alastair Miller’s claim, “A rough rule of thumb from clinical experience is that about
one-third of patients will make a full recovery, one-third a partial recovery and one-third will remain at baseline or deteriorate”, doesn’t stand up to scrutiny:
https://www.s4me.info/threads/dr-al...edicine-webinar-in-sept-20.17120/#post-292167

 

Plus, this is exactly what the PACE quacks have falsely argued, then when the NICE guideline were changed to reflect this, to speak of support rather than being curative, they completely lost their shit, made it one of their main complaints. So we know that they lie when they say this, just as Miller is lying here, but clearly in this profession lying is A-OK as long as they genuinely believe it's for the best. Which is exactly why they should never be allowed to lie, because they cannot make that determination safely, no one can.

 

I think this was true in the past. ME/CFS was presented as curable by CBT/GET and the physical identified with deconditioning. Either this was meant or it was a ruse to "hypnotise" the patient into appropriate behaviour since their condition and beliefs had "hypnotised " them into unhelpful behaviour. We can never be sure now whether apparent wish for rapprocchement is just another attempt at liaison for "hypnosis". I wish they would give some opinions on the Dutch L-C muscles and the 2 day CPET. What is their narrative there? What are they saying about concrete matters?

 

We're even seeing the same thing with LC. There is very little awareness coming from health authorities, but they mostly consist of "talk to your GP". Which is entirely pointless in most cases. Either GPs conform with orders to not say anything, or are genuinely kept ignorant by the same authorities. The vast majority of comments I see are still that most MDs are either unaware of don't believe in it.

Even the FND doctors are all about making other MDs more aware of it, how if more MDs were trained in their mythology they could achieve great outcomes, while in their own papers they constantly whine and moan about how common and expensive this all is, how keeping them out of health care is the best possible outcome.

It's all completely bizarre self-serving contradictions. Nothing about it makes sense.

 

Sometimes that’s just how it goes. Anyway, good enough is good enough, it’s a great letter. We shouldn’t have to worry about citing sources, we’re unwell, we’re not making an academic paper or leading an ME service.

 

Tom, are you minded submit a letter on this to the Observer? There are so many issues with his article I can’t decide which to focus on. Experience tells me that the shorter the letter the better chance of it being published. The Observer has a very small letters page so unlikely to be more than one or two letters in response to Miller.

 

This is excellent. Thank you again for writing it. Spoons well spent!

 

Re Alastair Miller's article in the Guardian 27/7/2024:


Alastair Miller is still a Medical Advisor to the Sussex and Kent ME/CFS Society. Questions to the Society and it's Chair about the Guardian article are in order. But the Society has no public platform where such questions could be asked. And the Society ignores letters/emails if they don't want to respond.

For those who don't already know, The Sussex ME/CFS Society had Dr Esther Crawley as a long term medical advisor as well, until recently. That Society is a travesty of a patient group. That Society undermines and sabotages ME patients.



https://measussex.org.uk/about-us/medical-advisors/

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