• Phoenix Rising needs funds to operate: please consider donating to support PR

NICE remove M.E. from neurological listings (UK)

Messages
1,446
Likes
3,623
.
Thanks Min.

The post is from the Tymes Trust Facebook Page (for anyone who wants too follow the developments of this) https://www.facebook.com/tymestrust?fref=ts

"NICE has removed it from their neurological listings as well"


Who on earth is responsible for these cock ups (or shennanigans)? NICE is a faceless organisation which wields a horrendous amount of power.

.
 
Messages
2,239
Likes
16,219
NICE have made this decision on the basis of a survey (published in 2011) which found that 84% of neurologists in the UK did not believe that ME/CFS was a neurological condition. They are now intending to place ME/CFS in a category of its own. Members of the Forward ME Group (MEA included) are all involved in how we should now respond to NICE on this.
 
Messages
2,239
Likes
16,219
NICE have made this decision on the basis of a survey (published in 2011) which found that 84% of neurologists in the UK did not believe that ME/CFS was a neurological condition. They are now intending to place ME/CFS in a category of its own. Members of the Forward ME Group (MEA included) are all involved in how we should now respond to NICE on this.
This is the 2011 report:

http://www.meassociation.org.uk/201...eurological-illness-survey-results-discussed/
 

Sidereal

Senior Member
Messages
4,854
Likes
17,257
Neurologists have an exceptionally poor track record of judging what is and what is not a neurological condition. Not too long ago they believed MS was a psychiatric disorder. I don't see why their current opinion of ME should be taken as gospel. I've never met creatures as arrogant and intransigent as consultants in neurology. Would a bit of self-awareness and historical reflection really hurt the egos that much?
 
Messages
5,898
Likes
12,685
Location
South Australia
NICE have made this decision on the basis of a survey (published in 2011) which found that 84% of neurologists in the UK did not believe that ME/CFS was a neurological condition. They are now intending to place ME/CFS in a category of its own. Members of the Forward ME Group (MEA included) are all involved in how we should now respond to NICE on this.
Wow, a category of its own? Does that mean there will be new specialists trained in this new field?

Oh sorry, I got ought and is confused again...
 

ukxmrv

Senior Member
Messages
4,413
Likes
4,604
Location
London
"DWP recognises CFS/ME as a real and potentially significantly disabling condition. The assessment of individuals with CFS/ME, or indeed any other condition, is not dependent on the condition itself, the underlying cause of its classification but rather on the disabling effects. The Department of Health has indicated that they have “always relied on the definition set out by the World Health Organisation in its International Classification of Diseases (ICD) under ICD code 93.3, subheading other disorders of the brain”. The DWP is in agreement with this views."

http://www.meassociation.org.uk/201...eform-tells-countess-of-mar-21-november-2011/
 

Cheshire

Senior Member
Messages
1,129
Likes
8,987
NICE have made this decision on the basis of a survey (published in 2011) which found that 84% of neurologists in the UK did not believe that ME/CFS was a neurological condition. They are now intending to place ME/CFS in a category of its own. Members of the Forward ME Group (MEA included) are all involved in how we should now respond to NICE on this.
I hope this category of its own is not something like "not completely organic, not completely psychiatric, a little bit of both" as some of the BPS proponents are advocating, having realise they can't ignore biological foundings, but judging them "stress related"...
 
Messages
2,239
Likes
16,219
@Jonathan Edwards - the fear here of course is that we're circling the plughole on the way to going down the drain of 'psychosomatic disorders' or similar.

Just wondering what your take is on this? I think this is really where we suffer from not having a medical speciality to champion us or claim us as their own.
@Jonathan Edwards - the fear here of course is that we're circling the plughole on the way to going down the drain of 'psychosomatic disorders' or similar.

Just wondering what your take is on this? I think this is really where we suffer from not having a medical speciality to champion us or claim us as their own.
Sasha As ME/CFS is a multisystem disease that crosses so many medical boundaries - infection, immunology, neurology, neuroendocrinology, muscle, cardiology etc - it has never fitted neatly into one specific -ology and it probably never will until we can clearly subgroup people under the ME/CFS umbrella in relation to both clinical and pathological phenotypes.
 

user9876

Senior Member
Messages
4,556
Likes
18,067
I hope this category of its own is not something like "not completely organic, not completely psychiatric, a little bit of both" as some of the BPS proponents are advocating, having realise they can't ignore biological foundings, but judging them "stress related"...
I quite like the idea of having a 'we don't understand the mechanism or have treatments' category. It seems strange to me that the medical profession cannot accept their ignorance and admit they don't have sufficient understanding to correctly classify something. Of course such categories should be viewed as temporary and their continued existence should be viewed as an issue for medical research.

If there is a separate category it is important that this doesn't fall by default under psychiatry.
 

maryb

iherb code TAK122
Messages
3,601
Likes
3,117
Location
UK
In the light of recent findings that so very many patients have several infections, whether they are viral, EBV, CMV, HSV1 & 2 etc and/or bacterial, Lyme, CPn etc. I would want my diagnosis and treatment started by an ID specialist. Then referred onto to any other relevant area of practice as the doctor saw fit for me as an individual. I can but dream....
 
Messages
5,256
Likes
32,001
@Jonathan Edwards - the fear here of course is that we're circling the plughole on the way to going down the drain of 'psychosomatic disorders' or similar.

Just wondering what your take is on this? I think this is really where we suffer from not having a medical speciality to champion us or claim us as their own.
I do not have a strong feeling about what heading ME should come under. Lupus comes under rheumatology in practice, despite not being particularly rheumatological. Sarcoidosis is about as 'orphan' as ME. I don't think doctors take any notice of what section NICE puts anything under in fact. Whether it has implications in other respects I am not sure. To change the care provision we need some solid evidence for effective treatment I think.
 

Esther12

Senior Member
Messages
13,774
Likes
28,356
I remember reading that and thinking 'what a worthless piece of research'... seems to have had political power though.

I expect that the new NICE category is going to be unhelpful. My view is that it would probably be best to try to have patient groups oppose it, unless it's really great, rather than try to negotiate towards something which is not too terrible and playing along with the process.
 
Messages
2,239
Likes
16,219
I remember reading that and thinking 'what a worthless piece of research'... seems to have had political power though.

I expect that the new NICE category is going to be unhelpful. My view is that it would probably be best to try to have patient groups oppose it, unless it's really great, rather than try to negotiate towards something which is not too terrible and playing along with the process.
Esther - I understand that NICE intend to place ME/CFS under a 'neutral heading' as ME/CFS (or CFS or CFS/ME). This will take some time to organise. At the moment I suggest that people leave further contact with NICE on this matter with the Countess of Mar and the Forward ME Group. I don't think letters to NICE from people with ME/CFS will help at this stage, and if some people write angry letters to NICE it could even be counter-productive.
 

Sasha

Fine, thank you
Messages
17,863
Likes
34,216
Location
UK
Sasha As ME/CFS is a multisystem disease that crosses so many medical boundaries - infection, immunology, neurology, neuroendocrinology, muscle, cardiology etc - it has never fitted neatly into one specific -ology and it probably never will until we can clearly subgroup people under the ME/CFS umbrella in relation to both clinical and pathological phenotypes.
I take your point but surely we aren't the only such disease? What happens with other diseases that are multisystem disorders?

And while we're waiting to be subgrouped, we need to keep out of the 'somatoform' category. What should we be doing? Do you think that this special category that's being planned for us is going to make it clear that this is an organic disorder?