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In 2011 I had a bad bout of swine flu, which resulted in sudden loss of hearing and persistent post viral symptoms including fatigue, cognitive difficulties, and effort intolerance which morphed into PEM. I knew how to pace myself and the importance of not doing too much and managed my...

We do need theories to be postulated, if only so they can be tested and lessons learned including that any particular theory is way wide of the mark. The problem is that the theories being put forward appear to me to be no more than cursory speculation, often looking at only a very small part of...

A good depiction of the Elephant in the room. No amount of services/care plans will make things better if the Elephant is not first removed. We fought and got access to a Hospice, a quiet room, considerate nursing, compassionate Doctors etc but it was eating difficulties and severe ME being...

@Simon M makes a relevant point that the pre-print paper makes a comment about its relevance to diagnosis and treatment by making the statement their results show ‘it’s not a Psychological illness’. Much of the discussion on this paper is/was about the evidential standard required to...

But being sent away from the GP’s and clinics with an unsubstantiated and unexplained diagnosis of Psychological ME/CFS because as they have repeatedly held over us for the last several decades there is no biomarker diagnostic test for the illness, is the reality of the patients and their carers...

Depression can be identified as a physical/biological response to ‘terrible life circumstances’, made better, not by CBT or other psychological therapy to change your thinking or mental response, but by removing yourself physically from those ‘terrible life circumstances’. This was my...

I am not arguing about the contribution of the importance of Sean’s professional good standing and influence as a journalist, but for me the star witness in these proceedings is M herself. She clearly showed she was a fully competent person who understood her predicament and demonstrated that...

Some of the best advice I ever received was from my first line manager after having just started working life. A project I had been placed on was running into several difficulties and looked like going off the rails. I was in a mild panic and turned to him for guidance. The first thing he did...

Oh my goodness. Where do you start with this and what is it trying to do, for whom and what purpose. It looks to me like it has been inspired to an extent by a DLA/PIP or Invalidity type questionnaire which is trying to elicit from the applicant what they can do, what they can’t and which aids/...

The biggest issue and for me the hardest to overcome is the loss of trust, not just in the medical profession and health service, but also in all those who buy into the idea that you are a malingerer or in my case as a carer an utter fool for believing ME is a biological illness. It is a shock...

It has long been recognised by some Doctors experienced with treating ME patients that ME patients do not cope well with ‘Standard Medical Care’. This manifests and presents in lots of different ways, from not coping with the medical consultation process ie attending the Doctors Surgery to not...

I think it more likely that the medical and science evidence/opinion given at the Inquest, clearly shows that there was and is no medical explanation or any medical/science evidence to support a psychological attribution to ME. Clearly the medical evidence presented shows the patient is...

See post below: The Coroner specifically said that ME was physical not psychological which will be recorded in evidence I believe.

First a disclaimer. I have no legal training, but can read and sometimes but not always correctly interpret some of the meaning in what I read. The link below takes you to a very simple and clearly set out description of the rules and guidance Coroners have to follow in order to arrive at their...

Important and relevant points from Kitty, I think. The Coroner’s response to the ‘complete clusterfuck’ may not be as full or clear cut as we would like it to be, but the focus has changed somewhat from just blaming the patient to looking at systemic NHS shortfalls in knowledge and resource...

M, as my late wife did, asked for clear medical care systems and safety nets to be put in place before they could consent to further medical treatment. Instead as per this quote: I have noted the following particular details reported in the press and other sources from the written and other...

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...

Jonathan makes a very good and important observation here which has implications for the patient as well as HCP’s. On a personal level I have found following this Inquest very challenging as the experiences of M and her family so vividly match the challenges and experiences that my late wife...

Exactly this. Once you accept the reality of the intolerance symptoms and you don’t know the cause, then mitigation of the symptoms is the most fruitful avenue. For my late wife this meant ‘Pacing’ to mitigate effort intolerance and the identification and removal of any number of environmental...

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...