It sometimes feels like the underlying issue is that disability is framed as psychological problem because society cannot accept that the patient is disabled (and unable to work or contribute in a meaningful way).
A useful message, bluntly expressed, could be to "hate the disease, not the sufferer".
Sadly if you are a child accessing NHS services the proforma is to dig for adverse child experiences, and to keep digging as there must be something there which accounts for things.
There is a very limited treatment approach which still centres on CBT . It's a sausage machine.
A friend of a friend who left CAMHS confirmed this. They had a set process and were not supposed to deviate even if question responses invoked an obvious issue. They left the service appalled that they could not sensitively counsel a child with suicidal tendencies .
Like FII it reframes things to suit a tick box agenda.
At which point surel then that isn’t therapy (and these people need to stop being allowed to use the terms they do falsely in order to mislead) but taking advantage of that position they’ve been given only by the disguise of ‘therapy’ historically supposedly being therapeutic so ‘doing good’
It feels like the lines talked about to justify powers they hold are not heeded in reality and there are big issues in the sector and what it actually does. As if I’m surprised but that it has got so out of hand and law etc hasn’t picked up on it in this day and age, well yes it reminds me I should be because that’s scandal level.
They know and would have had it hammered in via any training 20/30yrs ago of the issues with creating false memories due to that bring a big scandal then for the entire area. So I find it shocking that this which seems to have direct lessons from that and the well known debunked munchausen bi proxy trials where they allowed one man’s personal testimony based on his personal views of things to dominate rulings that sent people to jail got uncovered but has anyone demonstrated they learned lessons from that ?
The long Times article of 19/7/2025
'We demanded help for our sick children. We were accused of abuse
Some of society’s most vulnerable are being torn from their families by officials who claim their parents are fabricating illness'
'New research shows that FII [Fabricated or Induced Illness] has been substantiated only in four serious case reviews since 2010 and caused no deaths. Yet a snapshot survey by the University of Leeds in 2023 found that almost 400 families reported having been accused of FII.'
I've now managed to read the whole of this earlier article, which is what prompted Sarah, Maeve's mum, to contact The Times regarding her own experience of it.
I can now therefore disclose what else I found during my FII and FDIA research last Sunday. When you've been diagnosed with paranoia resulting from an unreasonable fear the state will harm you ,anythiing that you subsequently say along the same lines can cause me to be scooped up again, as I would appear to be demonstrating that paranoia. I therefore have to be even more careful with facts, than I was before.
The parents of children or vulnerable adults who fear further FII or FDIA investigations (mostly women) will feel similar fear of speaking out after they've been investigated, even if subsequently cleared.
It is the best of all ways to silence opposing voices, and that of the patient's and their families, is it not.
Publication of the ME/CFS NICE Guideline ng206 was stopped at the 11th hour the day before its due publication date of 8 October 2021.
The Royal Colleges had objected to its publication. Maeve had died earlier at the beginning of October 2021.
This immediately triggered a grant of Legal Aid for for a Judicial Review of that decision on behalf of - (a Minor). Roundtable meetings were called by NICE to try and reach agreement. It was eventually published on 29 October 2021.
These facts will never change. This was, and still is, the 'existing service' provision which is being considered in the NIHR HERITAGE programme.
From article :
Clements said: “The thing that hits you like a freight train when you get those survey responses is the trauma that families experience. Some of them have spent periods in prison before being vindicated. Many of them have lost their jobs. Many of them will never ever have anything to do with social services or health services again.”
Dr Luke Geoghegan, head of policy and research at the British Association of Social Workers, said: “This feels like it could be a moral panic. The number [of families accused] does seem to be very high, which makes me suspicious.”
Andy Bilson, emeritus professor of social work at the University of Central Lancashire, said: “Although a range of guidance and journal papers suggest that FII is associated with a high risk of mortality or serious harm in as many as 10 per cent of cases, analysis of serious case reviews in England from 2010 to 2021 found no child deaths resulting from FII and only four cases of serious harm, all linked to earlier concerns about overmedicalisation or clinical error.”
Bilson believes official guidance “pathologises disagreement” by parents.
The inquest heard that a doctor had emailed another staff member to say they “should not pander to this family”. Driscoll said: “We were classed as problem parents because my daughter didn’t have a voice. I spoke for her. And this doctor was very much of the view that — she even said it to us — ‘I am the one with the PhD, you’re just the parent’.”
Since her daughter’s death, Driscoll has been plagued by fears that the younger of her other five children will be taken away. When the school wanted one of them to be assessed for additional needs, she was scared to sign the paperwork in case she was accused again.
Driscoll said: “Even though I was proven innocent, it’s still on my records that I’ve been accused of it. So I still get looked at differently”.
To understand the entirety of relevant context the whole article should be read.
I shan't be here for a while now as I return to pacing properly, finish the complaint, and prepare for the battle ahead because of the second Prevention of Future Deaths Report received by the DHSC on 7 July 2025, and the continuing manifest imbalance of power and abuse of power.
There was an article in the Times last Thursday Jan 16th which contained a short paragraph referring to Maeve's inquest. " A Devon coroner complained: " I write a lot of these [PFD] reports and often nothing happens."
PFD = prevention of future deaths
The article entitled " Reform our failing inquest system urges sister of tragic head teacher" focuses on the death of Ruth Perry, who died by suicide after an Ofsted inspection in which the primary school of which she was Head was downgraded from 'outstanding' to 'requires improvement'. Her sister Professor Julia Walters called for reform of the inquest system and said that " public bodies should be legally compelled to make changes when concerns were raised by coroners."( my bold)
She also drew attention to "disparities in the allocation of legal funding." Public bodies receive taxpayers' money to fund legal teams while families are often not awarded legal aid. I think this was the case at Maeve's inquest. Perry's family crowdfunded £50,000 to pay a legal team.
Public bodies were identified by the coroner in Maeve's inquest but Sean O'Neill thought their responses lacked substance. See David Tuller (@dave30th ).A requirement to make changes would have made a significant difference.
From Sarah Boothby‘s (Maeve's mum) Bluesky account:
#1
OMG; Dr David Strain, expert on everything medical so long as it gets him in front of a microphone. Giving it large on diabetes BBC Radio 4 Today (pre 7:00 BST this am).Strain took Maeve off the list for admission under specialist CFS service and advised eating disorder ward "7-10 days of NG" feed
would be adequate, made 0 attempt to treat her OI & refused to prescribe low dose Abilify she was asking for in hospital.NHS starvation diet insisted upon pushing her so far into anaerobic digestion she was crashed 18 hours a day, ie complete paralysis; extreme sensitivity to sensory stimuli.
At the final discharge meeting he said she needed to meet other people in recovery from being so poorly. She was literally being starved to death; and there are no venues or opportunities for meeting other people in recovery from very severe ME anywhere. The man is a narcissist equal to all others.
I agree @Sean. The protection is unaccountable, except its all been minuted so its a matter of record. In a Safeguarding procedure, legislated to hold the police, SS and NHS jointly accountable.
With equal accountability, for a reason. There is method in this madness
I deduced this is still undisclosed under an inexplicable NDA
I think there must have been a non-disclosure agreement (NDA) as its routine in some F.I.I cases. If considered intractable, maybe.
But all such NDAs have a shelf-life with a due procedure specified for lifting it.
Such NDAs were not intended to conceal evidence from a Guideline consultation, a Coroner, and in the Chester Hospital Case, from a criminal Court and an Inquiry.
On behalf of the Kidd family, under another live NDA, the Police and SS and NHS are still deciding what to do next, as are the hospital, prosecution services and the family Court.
Safeguards can be duly extended to protect organisational reputation, and the community. Someone got uncomfortable with the term Protection, as in Child and Adult Protection
So now we can call it a Safeguard
A misused NDA is a form of blackmail applied to multi-disciplined safeguarding networks under legitimised threat
In my view, this is why there is no forthcoming evidence to be had for the asking. A lot of people are silenced by misuse of Compliance law. I can call this an unbroken "omerta".
ME/CFS Final Delivery Plan. (A national healthcare policy document)
My PA who has been a professional carer for 25 years will not be able to access the 3rd eLearning Module on severe and very severe ME/CFS, due to be available later this year because she does not have the required email account. For those who do not know the 'IDP' is the 'My Reality: Interim Delivery Plan' attached to the public consultation which took place in Sept/Oct 2023. Below are what I believe are the reasons why.
The following quotes are from the Final Delivery Plan
The previous IDP action ‘NHS England will develop an e-learning module on ME/CFS, which will be aimed at health and social care professionals and available to members of the public’ has been updated to include an additional 2 modules, covering:
primary care, which has universal access
severe ME/CFS (which includes both severe and very severe ME/CFS), access to which will be limited to users with NHS, GOV, and ac.uk email addresses
“Requests from the Task and Finish Group include ensuring learning resources, such as the NHS England e-learning modules, are shared more widely for expert input, available to allied health professionals, and made mandatory for health and social care professionals. Members also suggested that indicators should be developed for measuring the effect of e-learning on changes in practice. Furthermore, members recommended including training on ME/CFS as part of mandatory safeguarding training for CYP and adults, and suggested ensuring mental capacity assessments are suitable for those with severe ME/CFS.”
This feeds in to a problem with informed consent because of Montgomery v. Lanarkshire Healthcare Board [2015] Supreme Court decision.
Below is from a review of the legal aspects surrounding the principle of informed consent. It includes a discussion about the 'therapeutic exception' formerly known as 'therapeutic privilege'.
Long read - mostly for medico-legal people - but includes this on therapeutic exception i.e. withholding of information:
Principle
The TE was not relevant on the facts of Montgomery and so it is perhaps understandable that Lords Kerr and Reed did not set out a justification for its retention. They did however make clear that:
[The TE] is a limited exception to the general principle that the patient should make the decision whether to undergo a proposed course of treatment: it is not intended to subvert that principle by enabling the doctor to prevent the patient from making an informed choice where she is liable to make a choice which the doctor considers to be contrary to her best interests.
Some doctors feared that more stringent disclosure requirements would risk overwhelming patients with information, causing distress or leading them to make poor decisions, while doctors’ time would be taken up with lengthy explanations, creating a drain on healthcare resources. Information overload is unlikely given that information should be tailored to the patient. But doctors must judge what is appropriate for each patient and how their exercise of judgment might be assessed by the courts. The doctor might think that disclosure of certain information could lead the patient to a decision that is not in their best interests, as was true for the Montgomery case. But the ethical and legal position is clear: doctors must not withhold information simply because they disagree with the decision the patient is likely to make if given that information.
Making sure that patients understand all the information they need to make a decision will inevitably take longer. But allocation of health resources should be tackled systematically rather than individually. Healthcare policy should cover, for example, which treatments should be available and how consent procedures should be handled.17 The doctor’s duty is simply to treat patients according to their interests, which might include being given more information than usual.
A second concern was that the ruling would encourage “defensive medicine,” shifting the focus from helping the patient to protecting the doctor. But doctors should have already been following GMC guidance, which highlights the importance of communication.13
Finally, doctors criticised the focus of patient autonomy over medical paternalism. But this is a false dichotomy—the idea of a fully autonomous patient making choices completely independent of the doctor’s input does not reflect the complex reality of medical decision making, nor does the caricature of a paternalistic doctor riding roughshod over patients’ objections.
Patients are not always aware of the facts of their treatment after consent related discussions,26 and they are influenced by the way in which information is presented (the “framing effect”).27 But the difficulties of conveying information about treatment and risks should not be taken to indicate that patients are incapable of understanding medical information or that patient autonomy in decision making is meaningless. Rather it shows that the communication process has a strong influence on how patients understand, remember, and evaluate information—all of which are essential to informed consent. The doctor’s role is to ensure that relevant information is presented to enable the patient to use it meaningfully.
It could be argued that the ME/CFS Final Delivery Plan, as a cross government healthcare policy document, tells doctors it's OK to carry on as before regarding severe and very severe patients, in particular.
ETA: The Montgomery case involved a pregnant woman with diabetes.
Our President, Clare Francis MBE, has worked closely with Action for ME since 1987 and has had ME for more than 20...
www.actionforme.org.uk
Sonya Chowdhury, Chief Executive, Action for ME, says:
'Dr David Strain is our Medical Adviser and was appointed in June 2021.
Dr Strain brings a wealth of clinical and academic experience to our charity, as Senior Clinical Lecturer at the University of Exeter Medical School and as a consultant to the Devon ME/CFS specialist service. He leads the British Medical Association’s Covid-19 response team and has repeatedly drawn parallels between Long Covid and ME/CFS, calling for research to benefit all post-viral illnesses.'
No disrespect to Sarah but he is qualified to talk about diabetes.
Image: Professor David Strain
University of Exeter Medical School, Exeter
Dr David Strain based in the Diabetes and Vascular Research Centre at the University of Exeter Medical School.
His main focus is the health of older adults with diabetes; ensuring the right patient gets the right treatment. He has performed the only study to date demonstrating the feasibility of individualizing targets for older adults across Europe. This has informed the new UK guidance document for the management of older adults with diabetes and Frailty, of which he was lead author.
Additionally, he has performed a global project exploring the causes of clinical inertia in diabetes in conjunction with the IDF called ‘Time 2 Do More in Diabetes’. As a result he has initiated several projects in the UK across primary and secondary care aiming to reduce this phenomenon
ME/CFS Final Delivery Plan. (A national healthcare policy document)
My PA who has been a professional carer for 25 years will not be able to access the 3rd eLearning Module on severe and very severe ME/CFS, due to be available later this year because she does not have the required email account. For those who do not know the 'IDP' is the 'My Reality: Interim Delivery Plan' attached to the public consultation which took place in Sept/Oct 2023. Below are what I believe are the reasons why.
The following quotes are from the Final Delivery Plan
This feeds in to a problem with informed consent because of Montgomery v. Lanarkshire Healthcare Board [2015] Supreme Court decision.
Below is from a review of the legal aspects surrounding the principle of informed consent. It includes a discussion about the 'therapeutic exception' formerly known as 'therapeutic privilege'.
It could be argued that the ME/CFS Final Delivery Plan, as a cross government healthcare policy document, tells doctors it's OK to carry on as before regarding severe and very severe patients, in particular.
ETA: The Montgomery case involved a pregnant woman with diabetes.
We need to push for patients affected being able to assess this in such an area of distrust, and lack of expertise especially. You’re suggesting a worrying motive around handling of very complex cases?
I also dislike how all of the severe ME APPG inquiry evidence gathering is behind the scenes when this can be live streamed. I understand that some might not want their testimony public but even the recruitment is hush hush and not in any of the online spaces I visit & there’s this aura, in my opinion, of cover up and keeping awkward stuff hidden. Where there should be lights , scrutiny, inclusion and openness there’s closed doors
Our President, Clare Francis MBE, has worked closely with Action for ME since 1987 and has had ME for more than 20...
www.actionforme.org.uk
Sonya Chowdhury, Chief Executive, Action for ME, says:
'Dr David Strain is our Medical Adviser and was appointed in June 2021.
Dr Strain brings a wealth of clinical and academic experience to our charity, as Senior Clinical Lecturer at the University of Exeter Medical School and as a consultant to the Devon ME/CFS specialist service. He leads the British Medical Association’s Covid-19 response team and has repeatedly drawn parallels between Long Covid and ME/CFS, calling for research to benefit all post-viral illnesses.'
To be fair there isn’t many options and as an occasionally consulted Dr on general m.e he might not have been too bad. However, he clearly lacked regarding MBN & I saw problems in his early nhs modules but afaiu they were being open to feedback. I'd guess that the DHSC delivery plan groups or PAG doesn't have great number & breadth of severe ME experience in order to fully assess what’s being presented & why should not the community be allowed?
With Dr strains many jobs - diabetes dr, old age dr, BMJ rep, long covid research Co ordinator, how much time is he devoting to ME/CFS & how many severely affected, besides A handful of critical cases, has he ever seen, to have the role he has writing guidance?
I gather that he did not have the time to spare, which Action for ME could do with more of, from their ?Medical Advisor. At that time he seemed to be spread thin, like many dedicated people working, befriending, caring and loving in gaps designed, yes designed, into all systems - something being universally out of whack.
Well globally out of whack. It might not be the universe. "Do not adjust your set, there is a fault in reality". I remember that from the last century. But who tells my doctors its not my fault. My Reality is not my reality.
All I knew then about Dr Strain, was that he insisted to our MPs, in some all-party Parliamentary Group, that M.E and Long Covid be researched together, which I thought was unusually perceptive for the times, superbly laudable, sounded like good leadership, my hero etc. Can Action for ME still consult him, and ask him things?
Where does he stand now on malnutrition and options on trialling various medical feeds? Is he still medical advisor for a charity? Does he know why special medical feeds for the unspecified conditions were withdrawn?
Did he agree with the hoi-polloi that a healthy diet is sufficient in all cases? Does he now agree that there is a distinct subgroup, with partial digestive failure, to be manageably prevented, before it becomes total failure?
Might he surmise that maybe there is another sub-group, following a virus, which mutated some time between 1985 and 2005, maybe, which sub-groups hasn't got the same chance, of preventing total failure?
Ps I'd like to know the geography of groups writing guidance, but I query the cohort of particularly exclusive doctors who dont want other doctors involved, and so they dicker about current consultancy criteria, regardless of what warrants what. It became a closed shop. Consultants to the industry cite opinions too
Lucy Letby got targeted by a police consultant and expert witness with insufficient clinical experience. But Its not altgether consistent and rational, once its a closed shop. Group-think is supposed to be pre-empted by good practice and industry standards. It took an ex-MInister to say its the wild west out there. Once off the job
I gather that he did not have the time to spare, which Action for ME could do with more of, from their ?Medical Advisor. At that time he seemed to be spread thin, like many dedicated people working, befriending, caring and loving in gaps designed, yes designed, into all systems - something being universally out of whack.
Well globally out of whack. It might not be the universe. "Do not adjust your set, there is a fault in reality". I remember that from the last century. But who tells my doctors its not my fault. My Reality is not my reality.
All I knew then about Dr Strain, was that he insisted to our MPs, in some all-party Parliamentary Group, that M.E and Long Covid be researched together, which I thought was unusually perceptive for the times, superbly laudable, sounded like good leadership, my hero etc. Can Action for ME still consult him, and ask him things?
Where does he stand now on malnutrition and options on trialling various medical feeds? Is he still medical advisor for a charity? Does he know why special medical feeds for the unspecified conditions were withdrawn?
Did he agree with the hoi-polloi that a healthy diet is sufficient in all cases? Does he now agree that there is a distinct subgroup, with partial digestive failure, to be manageably prevented, before it becomes total failure?
Might he surmise that maybe there is another sub-group, following a virus, which mutated some time between 1985 and 2005, maybe, which sub-groups hasn't got the same chance, of preventing total failure?
Ps I'd like to know the geography of groups writing guidance, but I query the cohort of particularly exclusive doctors who dont want other doctors involved, and so they dicker about current consultancy criteria, regardless of what warrants what. It became a closed shop. Consultants to the industry cite opinions too
Lucy Letby got targeted by a police consultant and expert witness with insufficient clinical experience. But Its not altgether consistent and rational, once its a closed shop. Group-think is supposed to be pre-empted by good practice and industry standards. It took an ex-MInister to say its the wild west out there. Once off the job
At a very weak APPG meeting in around 2023, when there was clamour for the appg to do something about very severe ME / critical cases safeguarding, in response to Maeve and others that had made the news, Dr strain spoke at it & the very minimal minutes provided didn’t imo show much urgency or vision, seeming to imply long covid might Help with this “issue” (despite a lot of UK long covid research Not being particularly relevant to severe ME afaics)
“Discussion of severe ME with Professor David Strain
Professor David Strain spoke to the group about:
• The significant increase in severe ME cases over recent years
• The difficulty of treating severe ME given that hospitals often aren't attuned to patients' requirements
• The hope that current research into Long Covid will incorporate other post-viral syndromes and inform research on ME”
The trouble with adopting m.e community leaders from the long covid cohort, which dr strain mainly is , as is Jo platt & dr binita Kane, is their starting point was 5 years ago. There isn’t, in my opinion, reflection that we are somewhere in a 30 - 40 year battle for simple fairness and equality in terms of services and research resources that has had multiple attempts to “deliver” something and fallen way short, with the stakes, for the long-term moderate and severe partients waiting, ramping up with each opportunity lost and decade slipping by.
The trouble with adopting m.e community leaders from the long covid cohort, which dr strain mainly is , as is Jo platt & dr binita Kane, is their starting point was 5 years ago.
#pwME NHS module 3 is everything I feared it would be for very severe ME. Strain is not fit to author a #ME training modules. He presided over #MaeveInquest premature death, & almost killed another very severe ME px less than a year later. Why was he appointed to replace Dr Muirhead?
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