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He seems to not care and is making comments that he wants a NICE "mandated" test to distinguish between such patients. He cannot possibly be this uninformed and it seems like a political agenda to me.

He has just been talking about this on twitter - he was mentioning LP & Perrin in a tweet. His twitter feed is infuriating today. It is a disgrace. I am afraid I do not think he is operating in good faith at all.

I was thinking they couldn't use BAME - which would be the simple choice - due to its meaning as "Black, Asian & minority ethnic".

My GP also says ME and in my experience those who don't say it don't understand it at all. It's really dismaying that it's getting worse, to now just being referred to as "chronic fatigue" by a lot of the younger doctors. I hope there is a strong education effort.

This organization will have to change its name - BAMEC?

Are there any plans to stop referring to it as "CFS/ME"? I know we have other battles but this term should die in my opinion if the new guideline is published; there is no reference to "CFS/ME". I just shudder every time someone uses this. The NHS should not be using a term that is not in any...

The organization has a document on PEM on its website dated Aug 2021 (as is the "dysregulation" document). Did they not have one before? Does anyone know if this represents a change in position from prior to Aug 2021? (Sorry if this has been covered.)

Thanks for explaining. I have had the illness for a long time and have been helped by my GP (although she is the only one at the practice who will help me). As these services do not help, I was having trouble understanding the situation. I think I unfortunately still cannot quite believe that...

Sorry for not knowing but what are the mechanics of this organization being involved with patients? I cannot understand why all of these people are just allowed to sit around hypothesizing and are somehow given access to NHS patients.

‘They worry they will never get better’ We will certainly never stop being patronized.

I am afraid I don't understand what BACME do exactly but is there any hope of organizations becoming more supportive over time?

LOL :) From the website: phlebotomy – a procedure to remove some of your blood; this may need to be done every week at first and can continue to be needed 2 to 4 times a year for the rest of your life chelation therapy – where you take medicine to reduce the amount of iron in your body; this...

Whoa: "Nevertheless, in 1838, a lecturer at the Royal College of Physicians would still state that "blood-letting is a remedy which, when judiciously employed, it is hardly possible to estimate too highly", and Louis was dogged by the sanguinary Broussais, who could recommend leeches fifty at...

I kind of stopped reading at "Is catching covid now better than-"

Yes, it was surreal to read this in the BMJ!

Callous and context-free.

It seems that she isn't involved here (?) but to state the obvious Dr Myhill should be nowhere near this; she is not a good representative of the community and issues. (I am a former patient and she has been all over the place lately, claiming all kinds of absurd things including about...

It is frankly an invitation for them to roll out Paul Garner again

"Andrew Goddard, president of the Royal College of Physicians, said: "We were extremely concerned that the final guidelines proposed by NICE may not have taken into consideration the extensive comments we made to the draft version, particularly in relation to treatments we know to have...

I signed and commented; not sure the value but oh well.