NICE ME/CFS guideline - draft published for consultation - 10th November 2020

I've worn an actimeter before my treatment with CBT/GET and it wasn't a bother at all. The thing got hooked up and the only time I had to mind it was whilst showering. This was in 2003, I'd imagine the devices have gotten better and even less intrusive over time, but I'm not sure about that.

 

From Adam's Broken Battery videos

@ABrokenBattery
· 29 Jun
Dr David Strain talking at today's APPG. There are 3-4 types of Long Covid, one is very similar to ME/CFS. The ME/CFS service has 'probably been the most underfunded'. Graded Exercise only recently been removed, moving to pacing. Expects this area will be the 'biggest problem'.

If someone can upload the video attached to the above tweet Dr David Strain says at around 1.40 mins that only recently the RCGPs had updated their guidance on ME to remove GET/CBT. (paraphrase)

I wondered at the time about yhe RC of Physicians.



Video also linked at doctors with ME site: https://twitter.com/user/status/1409918390429523975




Doctors with M.E.

@DoctorsWithME
·
29 Jun

@DoctorsWithME
Honorary Fellow and BMA Long Covid Lead, Dr. David Strain, at today's All Party Parliamentary Group on Corona Virus

 

I take it all back.

the petition is here:

https://www.change.org/p/national-i...erail-the-review-of-nice-guidelines-on-me-cfs

 

Sorry if this has already been said/asked, (too many posts and Tweets to keep track of this afternoon).

I wonder if the three BPS members that quit, along with Dr CS who was removed, have made the voting process unfeasible..and the weasel words that NICE put out is covering up for this? Could the three have worked out that it would destabilise the voting for the final version and making a play to screw things over at the 11th hour and succeeded.. #conspiracytheories

 

No that was not the case.

 

Most NICE guidelines don't use voting. It's consensus or nothing.

 

Thinking it over, a bit worried of talk of legal proceedings if dont follow guidelines as we dont want legal proceedings if docs dont follow the current ones so important for them to use clinical judgment.
too crashed to follow through so just an observation

 

Posts discussing Alistair Miller and sonja chowdhery talk on Radio 4 have been moved to this thread.

 

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 a time. Some physicians resisted Louis' work because they "were not prepared to discard therapies 'validated by both tradition and their own experience on account of somebody else's numbers'."

Bloodletting was used to treat almost every disease. One British medical text recommended bloodletting for acne, asthma, cancer, cholera, coma, convulsions, diabetes, epilepsy, gangrene, gout, herpes, indigestion, insanity, jaundice, leprosy, ophthalmia, plague, pneumonia, scurvy, smallpox, stroke, tetanus, tuberculosis, and for some one hundred other diseases. Bloodletting was even used to treat most forms of hemorrhaging such as nosebleed, excessive menstruation, or hemorrhoidal bleeding."

The bloodletting empire!

 

I discovered a few years ago that the NHS still uses bloodletting, only not with so many leeches these days.

These days they stick a needle in your arm and draw out up to a liter of blood at a time, possibly several times a week, for conditions like Haemochromatosis.

https://www.nhs.uk/conditions/haemochromatosis/

 

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 is only used if it's not easy to regularly remove some of your blood

I'd be quite up for a bit of bloodletting and leeches myself but is chelation therapy actually a useful treatment? Have only seen it in dubious and dangerous contexts (more dangerous than bloodletting!)

 

So the comparison for PWME is that it (Edit, that is, GET) is like using blood letting to treat haemophiliacs?

 

Oi! I have haemochromatosis. Don't give them any bloody ideas.

 

Where is the paragraph with the tiny letters, where involvement of MECFS patients and also NICE advice are under a veto of RCP rulings?

 

Update: This was cancelled

(It seems the website doesn't allow to copy text -- further info see there.)

 

Probably irrelevant, but I wonder why the BMJ is a stakeholder. Why a journal? Is it also for other guidelines?

(Apologies if this is the wrong thread and a probably irrelevant question anyway -- just trying to tidy up my folder of draft forum posts and not up to search the NICE pages myself... )