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Statements like this demonstrate that BACME still consider ME/CFS as primarily a reversible condition:

I'd not read their guide to severe M.E. before, but followed the ME Association's link to it. There is some pretty harmful advice contained in it (I think harmful advice mixed in with some common sense advice is the most dangerous). https://www.bacme.info/sites/bacme.info/files/BACME Severely...

The GP METRIC training states the following: It also states the following:

I had full Ed Psych cognitive testing as part of dyslexia assessment in both 1997 and 2009. The results showed the exact same 'spiky' pattern of results over the individual tests and sub tests (so an 'uninterpretable' general IQ score) but there was a shift to the left of the standardised scores...

They are starting to research this phenomenon in Covid-19: https://www.medrxiv.org/content/10.1101/2020.10.20.20215863v1

Just listening to the discussion on cognitive problems from Covid-19 on Times Radio. This may be relevant to other threads on the forum where 'brain fog' is discussed, but just linking the research here before I forget: https://www.medrxiv.org/content/10.1101/2020.10.20.20215863v1

My M.E. was far better understood by my GPs prior to the introduction of 2007 NHS guidelines (my original GP was able to recognise the ignorance of the hospital consultant who diagnosed me in 1993)! So if the revised guideline does not undo the damage from the previous one than I won't consider...

As someone who has lived with this condition for almost 30 years I would have to disagree. There will be many patients given the diagnosis of 'CFS' and now 'ME/CFS' who have a very different condition than M.E. (a condition for which exertion provokes an increase in/worsening of symptoms...

I can foresee problems if the revised NICE guidelines continue to cite chronic fatigue as the core, defining symptom of 'ME/CFS', rather than PEM. If the guidelines are trying to also cover those chronically fatigued patients who do not have the specific symptom of exertion intolerance (as...

From this point of view, I am glad the 'Long Covid' is currently being taken as a physical problem and being recognised by the establishment as more than anxiety. The possibility of domestic violence after a partner develops Long Covid hasn't really been discussed in the media, just the existing...

If the consultant who diagnosed me with CFS/ME/PVFS (he used all the terms in the consultation) in the presence of my (now ex) husband had spent time explaining the severity of my condition to my partner the absolute need for practical and emotional support, that he needed to take on more...

Hmm... they make reference to 'physiological dysregulation'. Looking back to the content of the METRIC training for GPs, the content doesn't refer to the 'deconditioning hypothesis' of CFS (and ME,) but rather the 'dysregulation hypothesis'. So what is BACME's position now on the (still...

Precisely! There is absolutely no need to have any 'specialist' training for therapists to give 'supportive CBT' for patients suffering from 'ME/CFS', beyond understanding how life-limiting all 'severe chronic illness' is. The only training that would be useful for them to have, is to understand...

Riverford are now back to offering a greater range of products, including a greater range of organic meats, eggs, milk, cheese, butter, yogurt, cream, humus, bread and individually available 'in season' fruit and veg options. The minimum spend is £15 and you don't need to include a veg or fruit...

I think this highlights that PWME were concerned about the make up of the NICE review group for very rational reasons (the ability of certain members to scientifically and independently evaluate evidence), not simply a bias against psychological treatments!

This map seems to be able to show recent weekly new cases: https://www.arcgis.com/apps/webappviewer/index.html?id=47574f7a6e454dc6a42c5f6912ed7076 Edit: linked to from the gov.uk site: https://coronavirus.data.gov.uk/cases

A robust response will be needed because the MUS nightmare is happening in the NHS regardless of what the revised guidelines will say (or don't say). Even if the revised guidelines help PWME avoid the MUS treatments, these are still going to be the way the NHS deals with for example, chronic...

I wonder which research group this was? Additionally, why are Cochrane more concerned with 'research waste' than with the effects of poor and outright misleading research causing harm to patients, for example when medical practitioners take the abstracts and summaries at face value?

I feel like this too. I have never had a single hour where I have felt 'well' since I first had the symptoms of M.E. (mine also began in 1992). I have never been pressured to undertake either GET or 'CFS style' CBT, although over the years I have tried to do a lot more than I should have, most...

Yes, I agree with @Graham that the 'spoon theory' gives a false impression of what PEM is as well. It's not about borrowing from tomorrow's 'spoons', which implies that you just have less spoons tomorrow. But when PWME push beyond their limits they get ill and sick, as well as possibly causing a...