Important public service announcement regarding using the term CFS/ME

[Tulip]

...........

 

[Enid]

This looks marvellous Tulip (but then Prof Hooper always is). Do you know I wonder when or where this may be published (much needed in the UK).

 

[Tulip]

Hi Enid

This is part of the 442 page paper "Magical Medicine: How to make a disease disappear" that he submitted to the UK government in 2005 regarding the PACE trial.

 

[Enid]

Hi Tulip - thanks for your info - just hoping one way or another this is going to have a wide airing now. Time seems ripe with all infections being found.

 

[Tulip]

Enid,

Not sure if you are interested but you can download it from here to read: http://www.meactionuk.org.uk/magical-medicine.pdf

I guess the best way for it to get out is for us sufferers to circulate it on the net and to start including it in information put out to the general public on society websites, awareness day, in the media etc.

 

[SilverbladeTE]

Just stick to using M.E., the original, useful, biological-basis name, and utterly reject anything else that's come from those ass clown bigots!

 

[Enid]

Thanks for the meaction link Tulip - it's here in full for starters (public forum) which is great.

 

[eric_s]

Thanks. I also think we should never use the term CFS/ME. The IACFS/ME has it in it's name, but i guess they have a good reason for that. Maybe they will change it at some point, who knows.

I found this

ME/CFS was included by the distinguished neurologist Lord Brain in his textbook Diseases of the Nervous System, Oxford University Press, sixth edition: pp355

here. Lord Brain... unbelievable

 

[heapsreal]

My opinion at this stage until they find an exact cause would be to call ME/CFS a chronic immune dysfunction CID, leave out the fatigue as it trivializes this illness. My opinion is that since the term ME was used there has been studies that document immune dysfunctions and chronic infections that go with immune dysfunctions, i think it more accurately defines our illnesses, but then if some dont have immune or infections etc then we get into the whole, ME is a totally different condition. If ME is totally neurological, then ME starts to float away from retroviral/immunological causes, maybe a hit and run infection. Personally i also think if someone looked up what ME was and found out it was inflammation of the brain and spinal cord and muscles, some would probably think it was a condition that could be treated by using common anti-inflammatories. I just think we have grown out of the term ME, but with having terms like ME and cfs its hard to change as mud sticks. name changes are always controversial.

cheers!!!

 

[Tulip]

But heapsreal, until the day when it gets called whatever, wouldn't it be preferable to call it just ME? Rather than CFS or ME/CFS and having the whole fatigue thing in there? and the "oh I have that to" comments?. I do think that ME does describe what is happening at the central point of the disease though, but it doesn't describe everything as you said.

 

[WillowJ]

the useful thing about ME is that it's listed with WHO

the useful thing about CFS is that it connects to the recent biomedical research (and I'm certain this is the logic behind the use of ME/CFS by those groups who are for us), however it also carries a lot of negative baggage and irrational connotations/implied meanings

there's no reason for us to listen to wessely school on any account. they have no decent science anywhere, only a bully pulpit. they would use any name applied to this disease group. their goal is to keep alive the defunct (bio)psychosocial model, and psychiatry is rapidly losing ground to biomedicine (even traditionally psychiatric diseases like bipolar disease are now being discovered to be biomedical). hence the bloom of (bio)psychosocial theories everywhere. insurance companies are only too happy to help. however it will all implode sooner or later when they find it really doesn't help as much as actually treating the sick patients (CBT in the form of, say, sleep hygiene, does help the not-sick consumers to sleep better, etc.)

I think a totally new name would be good, which incorporates both the immune and the neurological findings, especially since ME has been unfairly mocked along with CFS (especially in the UK).

 

[heapsreal]

But heapsreal, until the day when it gets called whatever, wouldn't it be preferable to call it just ME? Rather than CFS or ME/CFS and having the whole fatigue thing in there? and the "oh I have that to" comments?. I do think that ME does describe what is happening at the central point of the disease though, but it doesn't describe everything as you said.

I agree with you but if they are going to change the name i think they can improve on it so it is not trivialized. But i know what your getting at i was just taking it a step further.

cheers!!!