And so are lots of ME sufferers. We are the same age as Wessely/White/Sharpe etc. But we have no private pension to look forward to. We are just praying to not be placed in care homes with managers and staff brainwashed by the 'they must exercise' ideology.
What the hell was the point of all our years of doing advocacy - when we will very soon be old, sick and helpless, and abused in care homes for the elderly? Hmm? And what are our so called Charities doing about it? NOTHING!
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From memory, I tried to argue that we know it’s not psychological because we have all this evidence of physiological abnormalities. Now, I would emphasise how little we know about the pathology. I would use the NICE guideline, the re-analysis of PACE and other studies to show that CBT/GET don’t work and cause harm. And I would highlight the systemic injustices which have been caused by the adoption of the unscientific BPS model of ME/CFS.I am interested as to what you would do differently and if you are able to share your original letter? As we have a whole new batch of MP's to get in touch with so there are a lot of "blank slates" to potentially contact.
We already have a thread for the service:I thought I had previously read the Leeds inpatient service had shut, however it seems that it is still there (see https://www.leedsandyorkpft.nhs.uk/...npatient-centre-psychological-medicine-nicpm/ ) though the webpage has not been updated since 28/12/22.
It’s title ‘the National Inpatient Centre for Psychological Medicine’ does not inspire confidence
...Their Service Information leaflet does not inspire confidence given one of the highlighted treatments is “graded activity programmes particularly in relation to fatigue” see https://www.leedsandyorkpft.nhs.uk/...Service-Information-Leaflet-December-2017.pdf . Should we have a specific thread on this Service?
The side panel explainer 'What is ME?' looks to have been changed, if it previously talked about GET and CBT. Here is the current version:Th mail are STILL using that side panel “explainer” of Me saying the treatment is GET and CBT despite the charities writing to them <angry face>
it’s actually an interesting article worth a read, apart from that. A lot more info from Dr Shelton.
Some 250,000 people in Britain suffer from the condition, which comes with flu-like symptoms, extreme tiredness and mental lethargy that can last for years.
Other symptoms of chronic fatigue syndrome (CFS), or myalgic encephalopathy (ME), include disturbed sleep, poor memory and reduced concentration.
The cause of the illness is unclear, provoking the heated debate that has lasted for decades among the medical community.
Some patients return to full health and others deteriorate progressively, however, most fluctuate between good and bad periods.
There is no cure for CFS, with the majority of treatments to reduce symptoms being ineffective.
Worldwide it is believed that 17 million people suffer with CFS, according to the ME Association.
We already have a thread for the service:
(Not a recommendation) [UK] National Inpatient Centre for Psychological Medicine (NICPM)
The side panel explainer 'What is ME?' looks to have been changed, if it previously talked about GET and CBT. Here is the current version:
The published letters to the Editor are good in so far as they address some of the missing information that should have been included by Dr Miller in his ‘Opinion’ piece. However, for me they do not cover the central issue, which is that in not giving full information on all the medical views around ME/CFS and the quality (or lack of quality) in the evidence base supporting them his public comments were legally and ethically unjustifiable.
Dr Miller is not the arbiter between the merits of competing or differing medical views. In the final and only relevant analysis, it is the (competent) patient who decides which medical view and treatment is right for them. The law (Montgomery and other Judgements) together with Professional Medical Ethics Guidance issued by the GMC, make it quite clear that Medical Professionals have a ‘Duty of Care’ towards patients (and members of the public).
This ‘Duty of Care’ requires that when explaining medical matters, they must give a full explanation of all the evidenced Medical views and treatment options together with information on all the risk’s associated with each treatment recommendation. Failure to do so is misleading and could be construed as an attempt to influence patient/public choice of medical view/treatment.
Creating or supporting a false medical controversy red herring is not the way to practice medicine and is detrimental to patients and the Medical Profession. Fully ‘informed consent’ is there to protect both the patient and the practitioner in just these circumstances.
We should not have to rely on letters to the Editor or comments below the article to correct for missing information or to remind that the patients fully ‘Informed Consent ‘ is the only basis on which any treatment can be administered except in very exceptional situations.
I wrote to the Observer in just these terms and did not expect to be published. However, some years ago we wrote to the Guardian in similar terms about another medical opinion piece on ME/CFS by another Doctor who wrote regularly for them. We were not published then, but he was not used again by the Guardian. I hope that the Observer will be more careful in future in ensuring that HCP’s fully fulfil their responsibilities to patients and the public when commenting on medical explanations and treatments regarding ME/CFS.
The unpublished letters will have influenced the choice and content of those published, so are not wasted effort. Thanks to all who wrote.
This is very true, I’ve had experience of the Guardian saying nothing supportive, but silently changing editorial direction. They’re very risk averse due to low staffing and tight margins.The published letters to the Editor are good in so far as they address some of the missing information that should have been included by Dr Miller in his ‘Opinion’ piece. However, for me they do not cover the central issue, which is that in not giving full information on all the medical views around ME/CFS and the quality (or lack of quality) in the evidence base supporting them his public comments were legally and ethically unjustifiable.
I wrote to the Observer in just these terms and did not expect to be published. However, some years ago we wrote to the Guardian in similar terms about another medical opinion piece on ME/CFS by another Doctor who wrote regularly for them. We were not published then, but he was not used again by the Guardian. I hope that the Observer will be more careful in future in ensuring that HCP’s fully fulfil their responsibilities to patients and the public when commenting on medical explanations and treatments regarding ME/CFS.
The unpublished letters will have influenced the choice and content of those published, so are not wasted effort. Thanks to all who wrote.
my bold - going to write this out and put it in my wallet in case of hospital admission. This is why, whenever you get something minor done like looking at removing a mole, they warn of a 30% chance of X happening etc. All other specialisms seem to do this as a matter of course, it seems overly fussy for minor issues with minor chances of some small inconvenience happening. But we should be getting that level of attention for ME and “management strategies” vs non-management etc.
Dr Roy said he’d never seen someone get it unless they were sectioned. Therefore the way he’s seen it is the right way and anything else is pooh-poohed.Interesting, the GP said one Consultant didn't think ME was a medical problem. Now we have the Matron of the hospital saying the same. So who is this Consultant? and what role did they play in her care? Has he or she given evidence? Why aren't they naming this consultant?
I can see the influence of a lot of medical defence lawyers telling their clients what they should and shouldn't say. It only takes one little thing and they could all be in big hot water.
Interesting, the GP has backtracked on her past statements saying it was the worst treatment she ever saw of a patient, to the alternative -she could not recall having done so and if she did, it was wrong to say. Has the trust wanted this statement removed because it is was so incendiary?
On the information provided here, thanks, I did think the Matron's evidence was lacking, or no one asked her, about the nursing staff's belief about ME being a medical or a psychological/psychiatric problem. Where was information on her caloric intake not being done as well as her weight. There seems to be an assumption that the core treating team on the ward is doctors, when in fact, nursing staff deliver the care and it is often their report of "out of normal" behaviour that can have an influence within the MDT. I guess we will never know.
There would have been a lot of nursing care needed at home for the TPN. I am not sure how often they would give it (my recall from quite a few decades ago, it was given over several hours, once a day). The district nurse would probably have to be there for the entire time to monitor the infusion and also go and collect it from the hospital's TPN dietician.
It is a bit confusing the timeline. Dr Roy got her swallow formally checked, I am not sure she ever got a NJ and he then thought she needed to be sectioned for TPN.
I find that hard to believe, if that is what he said. He is a gastroenterologist, he would have seen lots of patients over his career getting TPN. It is common on surgical wards when people eg. people's with Chrohn's Disease (and many other gastrointestinal diseases), who are unable to absorb nutrients in their GI tract go on TPN.Dr Roy said he’d never seen someone get it unless they were sectioned. Therefore the way he’s seen it is the right way and anything else is pooh-poohed.
Presumably, someone gets sectioned and forced to have NG - even if it involves them being forced? Which would involve a high nursing burden. Especially as it would make Maeve more ill.
I’m not sure if you’re conflating the hospital nurses with community ones?
I find that hard to believe, if that is what he said.