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People with severe ME/CFS have a very different life to people with a mild form, so how do we know whether the differences measured are a down stream effect of the behavioural differences or are inherently part of the underlying condition(s). (The old chestnut, association is not the same as...

I think this is relatively common outside the context of ME/CFS and with me I wonder if it is an aging thing. The drip on the end of the nose whilst eating a meal is stereotypically an elderly person feature, I can still picture my grandfather in his eighties at meal time with the rest of us...

Subjectively it feels that a simple measure like calories per unit of time does not correspond to what ever culminates in triggering PEM. Other things interact like the novelty of the activity, additional sensory stimuli or orthostatic issues. For example walking x metres on level ground alone...

Yes and no. The cough and runny nose used to be only when going in to severe PEM, however now it is less clear in that I get a runny nose after eating and after I first get up in the morning.

Unfortunately I have not read the article so it may answer my question, but how do you identify fibromyalgia separate to ME/CFS if the individual experiences PEM, given a diagnosis of Fibromyalgia concurrent with ME/CFS is not uncommon?

For younger people I suspect as long as they are sensible reconditioning will be fairly straight forward. Indeed when I had periods of varying degrees of remission in the past I was always surprised how easy it was increasing physical activity even after years of being housebound. But now...

I do not always get a runny nose during PEM but I sometimes do. The same with a cough. However I am also getting to the age where I need to dab the drip off the end of my nose after meals.

Even if the Center believes there is a specific ‘supportive’ role for non curative brain training, obviously many, if not the majority of practitioners, believe they can provide a curative input, further even doing something on line, with no overseeing practitioner, would only hypothetically be...

Thank you for setting out the arguments as always in such clear and through way.

The point of this thread is that this is a formal health clinic specialising in the management of ME/CFS apparently recommending an unevidenced psycho-behavioural treatment. These arguments would equally apply to recommending a drug treatment based on an underpowered physiological study of...

Copied post The point of this thread is that this is a formal health clinic specialising in the management of ME/CFS apparently recommending an unevidenced psycho-behavioural treatment. These arguments would equally apply to recommending a drug treatment based on an underpowered physiological...

Further, he is using his personal story to argue for a specific range of treatment programmes (am I being fair, I suspect I am as though he does not always name programmes himself, he does lend his support to individuals and articles/events that do), none of which he actually undertook. If he...

If brain training is not going to impact on the underlying condition and you should only attempt it when well enough and stable enough, as per the Center’s communications, what is the point of it? What is doing this ‘training’ supposed to achieve? Is it safe or acceptable to recommend something...

How can surgeons justify doing this surgery when there are no identified structural anomalies? I understand some people have experienced relief in their ME/CFS following surgery, but we lack any clear evidence that this helps MW/CFS when there are no associated spinal/cranial issues. Is there...

So you could get worse, but lose your health related benefits. Sounds very PACE-like, where deterioration can represent ‘recovery’.

But drug treatments have to jump through lots of hoops before they can be marketed which do not apply to psychological and behavioural interventions. Obviously that is not to deny potential issues around ‘big pharma’, but ‘brain training’ requires no prior safety evaluation and presumably, as...

I continue to be slow on the up take. I have just noticed that Paul also ascribes ‘one-sided polarised views’ to his opponents who unfortunately lack the ability to generalise an entire universe from the microcosm of a number of months of personal experience. What is decades of research...

I have just noticed ‘crowd funded ideologues’, is that you @dave30th? Had you realised that you, along with the ME charities, are stopping us get better? You are like George Monbiot, whose articles are the cause of Long Covid, presumably even in the hundreds of thousands of sufferers who have...

I would be very wary of accepting single symptoms as PEM even if there is a delay. There is more chance of other explanations. With the vomiting for example, migraine and vomiting are part of my PEM experience, but they are also part of my gluten intolerance, which also has a twenty four hour...

We are in danger of arguing in endless circles about delayed versus immediate PEM. We lack good descriptive data, we really need data on electronic activity monitoring (sorry I can’t recollect the right word) correlated with self reported symptoms and self reported PEM onset and duration. Until...