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The MEA has commissioned a membership survey as part of a governance review, members are being sent the following email with a link to undertake the survey online: I have not looked at the survey yet.

I understand the emotional significance of names and labels (and of course their ‘social’ implications), but personally what I see as the first step to changing medical views is identifying the biological underpinnings and hopefully meaningful treatment (s).

Basically they have decided on the treatments in advance, but even with such a bias ridden experimental design they don’t get the results they want, but the recommend their preferred treatment anyway, throwing in lots of buzz words like mind body, etc to justify still recommending what they have...

Thank you @dave30th for this excellent blog giving more context to this presentation of old wine in pretended new bottle.

I have specific problems with acronyms, so thanks to those who raised the issue. I haven’t worked out the pattern, though I struggle to learn news ones, can’t cope when there are a number of possible alternatives and just plain forget ones I ought to know.

I think this is an important word to bear in mind when responding to such as Miller et al, when we should ask why does the author mischaracterise any ME/CFS grassroots group as activists when they disagree their (the author’s) position?

I am approaching seventy so don’t qualify on the basis of age for the current booster programme here in the UK. Although my GP had previously agreed to move me up one priority category, I don’t think that was enough to make me currently eligible. Every now and again I make a half hearted...

It is hard because I don’t want to imply that people diagnosed with FND do not have an underlying condition that can seriously impact their lives, but I do suspect that in everyday medicine people so diagnosed are subject to same devaluing of their experience as encountered by people with...

My thought was even those that initially accept how their doctors define their FND diagnosis, they will after time learn they are not being offered much of practical value and learn to give up on medicine. Also I suspect they will over time become aware that any other condition is treated less...

@V.R.T. well done for getting your powerful rapid response in. I had worried that the BMJ might respond just to the external trappings of academia and reject your letter because it was not referenced, even though your informed personal account is as valid or even more valid than much of Miller...

Sorry I am veering off on ‘nettle soup’ stories. A nineteenth century Duchess of Devonshire, noted for her penny pinching, was served nettle soup in Ireland and immediately had this free food added to the menu at Chatsworth. Several years later touring the kitchen garden she was surprised to...

Gathering nettles in quantity is hard work. Though I love the taste, like spinach the new shoots boil down to almost nothing. I once made a nettle lasagne for twenty people. It was a culinary success, but never again as I needed a large sack full of stinging nettles and the nettle prep took a...

I wonder how many people with a FND diagnosis, like many people with ME/CFS learn to avoid doctors altogether or at least subsequently try to conceal the FND in medical consultations on other matters.

The more I think about this being a hermit to prevent ME/CFS the more it seems to make sense, neither Julian of Norwich nor Simeon Stylites seemed to have the condition, and it does not seem to be a religion specific association as Milarepa, though turning green from a diet of nettles, did not...

When I first developed ME I was training as a yoga teacher and had a long standing regular meditation practice, perhaps I should argue that these were the reasons my acute EBV infection (glandular fever, mono) triggered my initial onset. When I had my first remission, I no longer had a yoga...

I agree with your analysis. Though the evidence for ME/CFS being psychogenic is laughable, and further I believe on the balance of probability it is more likely to be a biomedical condition, until we have a clearer understanding of the aetiology the current associated physiological...

It reads well and is very clear. I don’t know though how the BMJ will react to a personal statement, though Garner has been pushing his personal statement at any and all opportunity.

Similarly more people die in Hospital beds than in outpatient departments, so should hospitals do away with any inpatient facilities and treat every one on an outpatient basis? It would also save lots of money.

To quote from Benita Kane on Bluesky cited by @Trish above: “We hope it sends a strong message to those still pushing outdated dogma and non-evidence based opinions: It will NOT be tolerated by either the scientific or patient community. It is these attitudes that have led to the dismissal and...

As the Long Covid Advocacy blog points out that this narrow application of mindfulness is a misuse of the technique that arises from its selective abstraction from the context(s) that originally developed it. For example in the context of Buddhist meditation mindfulness is only one of a range of...