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I think that the Coroner will be looking very hard at this issue with a view to identifying whether there are any missed opportunities for providing Maeve with the nutrition she wanted and needed to keep her alive; and if so the reasons which contributed to those opportunities being missed and...

Apologies for this long post, but your question is a good one. The situations outlined below all pertain either to HCP’s right to diagnose, investigate and treat ME/CFS as a primary biological illness and/or the patients and their main carers right to choose that clinical approach and gain...

It is my experience that our understanding of any communication always starts from where we personally are in our own understanding of the matters being communicated, which only very rarely if at all, will be exactly where the communicator is coming from. We all read into things what we...

I too have first hand experience of this situation as the carer of my late wife who died in a Hospice as a result of nutritional failure described as ‘Inanition’ on her Death Certificate with ME/CFS over the previous 30 plus years as a contributing factor. We had to fight very hard, reminding...

Jonathan, I think, covers these points in the paper when he states that: ‘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.’ He...

I posted the comment below to the Virology Blog re David’s article on Jonathan’s paper and thought it also relevant and perhaps useful here. I would only add that the Montgomery Judgement has retrospective force applying to any treatments administered since at least 1998 and possibly earlier...

An excellent paper, which clearly sets out the current very serious difficulties experienced by ME/CFS patients in this area of clinical concern. It signposts for HCP’s and patients the validity around the existing ME/CFS diagnosis and the indicated resultant clinical care pathway of likely...

This is an interesting updated model, which covers the sex differences and encompasses PEM features. It has an elegant sophistication to my untrained eye, which takes the trying to understand and unravel the causation/continuation of ME to yet another level. Thank you very much for doing this...

I find a lot of Wisdom in the Native American Proverb: ‘Never judge another man (person) until you have walked a mile in his (or her) moccasins.’ Asking someone to tell you what it is like to walk in their moccasins, comes a very far away second best as you inevitably interpret their replies...

In the 1960’s my parents worked in a very large Mental Hospital, my father as a manager and my mother as a nurse. Housing was provided for quite a lot of the staff and as a young teenager that was my home environment for 6 years. Psychiatry has not produced a cure for any medical condition that...

Thank you, Jonathan, for trying to take this forward. I agree with your stance on the likely helpfulness or not of this open letter and that the current NICE Guidelines undoubtedly say what can be said on this, given the current state of our knowledge on causation. I can also attest from...

I agree the issue is not the label/diagnosis but the mindset that produces it and (I would add) also the mindset with which it is received and interpreted by those to whom the label/diagnosis is applied to. I suggest that the tool to change that mindset already exists but is a much ignored or...

All well and good except that far too many of these ‘idiotic’ health care professionals use their position not to look for the truth, but to actively ‘profit’ at the expense of these patients fobbed of with a meaningless diagnosis. These Health professionals pretend to offer something better, as...

NICE has told me in correspondence that they can only advise, not instruct Doctors and that ‘changing Clinical Practice is one of the most challenging parts of our role’. The GMC have also told me in correspondence that: ‘They would not want to reach the situation where medical Doctors are...

There are several interrelating areas here. The relationship between Medical Scientist/Doctor and patient is mediated by, ‘carefully reasoned’ medical ethics and Law as set out in various legal Statutes and Judgements. I will mention two areas here where ‘careful reasoning’ has set precedent...

I offer the following comments on the ‘health care culture’ surrounding ME and some remarks about my personal experience as to how widely the harms spread, even beyond ME patients. I apologise for the length. First, it is not for the patient to prove they are ill. It is for them to truthfully...

Exactly. And my reading of this Study from a lay persons point of view is that some of the language used by the writers to discuss their findings obfuscates the issue by not clearly drawing out that their findings as reported completely validates Hoopoes and countless other ME patients...