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I also only got priority delivery from Waitrose after I had my first delivery, although I didn't need to do that with Tesco or Sainsburys.

She can resubmit the form with the 'right' answer to this question, so she gets priority delivery. You can update your answers as often as needed, but it can take a week or so for the information to get to the supermarkets.

What we need is a CARE plan, not a 'management' plan. In the autism guidelines they refer to a 'Personalised Plan', which is centred around ensuring the person has the right care and support. https://www.nice.org.uk/guidance/qs51/chapter/Quality-statement-3-Personalised-plan

I agree that the USA MEAction appears to be doing this, which is why I said in the early post (where I gave Autistica as a positive example) that I think it would be wise for the UK branch to consider separating themselves from the original organisation, so we are left with a patient led...

I don't know how others feel but I feel that the MEAction charity is being a lot more proactive on actually fighting for real change in our daily lives. I have no idea if this sort of patient led advocacy is being suppressed in the more 'top down' ME charities. I didn't gain anything from being...

I was thinking this too. There was a similar problem in the autism community with Autistica originally being affiliated with the damaging USA organisation Autism Speaks when it was first being set up. However the UK organisation has distanced itself and has shown it has completely different...

When I had these swabs done in hospital I really struggled with the my gag reflex and the nasal swab also made me cough and choke, so there's no way I would be able to take these swabs properly myself.

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...