Release of the IOM report - live webcast-2/10/2015
- Thread starter Nielk
- Start date
I just signed up for a free account for the Annals of Internal Medicine but they still don't show me the article even though my account has been registered. I have no idea what to do.
jimells
They have to stay within their remit. They have no choice about that. But they did pointedly highlight the appalling lack of funding. The implication for future funding is crystal clear – there must be a lot more of it.
I would actually prefer they did not get into specific numbers at this stage. This is a multi-stage process. One step at a time, and we just took one of the two most important steps, the other one being how much research funds are placed on the table.
They have to stay within their remit. They have no choice about that. But they did pointedly highlight the appalling lack of funding. The implication for future funding is crystal clear – there must be a lot more of it.
I would actually prefer they did not get into specific numbers at this stage. This is a multi-stage process. One step at a time, and we just took one of the two most important steps, the other one being how much research funds are placed on the table.
To be fair to the BMJ (and I think we should be fair to them, when they do a reasonable job), they make it clear that depression and anxiety are secondary (i.e. caused by the misery of having the illness, not part of the illness itself).
@charles shepherd - how do you see the implications for the UK of the new name and new diagnostic criteria?
http://www.medscape.com/viewarticle/839532#vp_2
Some of the comments show how this report is no magic wand...
Some of the comments show how this report is no magic wand...
Another failure of this report is the assignment of a specialty to be responsible in the care of this complex disease. They attempted to "simplify" this disease so that GPs can diagnose it but other serious disease like MS, RA, Parkinsons..etc., have specialists who care for them.
- Messages
- 764
- Likes
- 2,559
Another important question.
Is a TILT test going to be a screening tool for SEID Orthostatic Intolerance?
(OI being a reported criteria of SEID, but not a requirement). :thumbdown:
If they allow this (common sense medical approach), they will find that many SEID have POTS.
POTS is CNS dysfunction, neurological.
A TILT test would demonstrate if someone has CNS associated Orthostatic Intolerance or it's just a 'belief'.
Psychiatrist, Peter White (PACE) said on BBC radio that using a TILT test for CFS/ME patients, would be ''unethical'' as it's unnecessary.
Are the IOM going to follow this pungent view point or actually start helping patients with acquired neurological disorders be screened for actually having one, using a TILT test? Lets cross our fingers that if you get labelled with SEID (cut down CCC CFS with no pain required, non ME), some people with POTS, might at least find out they have it.
So many with CFS have POTS, have no idea, and they can't get tested.
Introducing TILT testing for people with OI, would make sense to be a mandatory SEID when safe to implement (post 24hr Holter, BP monitoring etc).
Is a TILT test going to be a screening tool for SEID Orthostatic Intolerance?
(OI being a reported criteria of SEID, but not a requirement). :thumbdown:
If they allow this (common sense medical approach), they will find that many SEID have POTS.
POTS is CNS dysfunction, neurological.
A TILT test would demonstrate if someone has CNS associated Orthostatic Intolerance or it's just a 'belief'.
Psychiatrist, Peter White (PACE) said on BBC radio that using a TILT test for CFS/ME patients, would be ''unethical'' as it's unnecessary.
Are the IOM going to follow this pungent view point or actually start helping patients with acquired neurological disorders be screened for actually having one, using a TILT test? Lets cross our fingers that if you get labelled with SEID (cut down CCC CFS with no pain required, non ME), some people with POTS, might at least find out they have it.
So many with CFS have POTS, have no idea, and they can't get tested.
Introducing TILT testing for people with OI, would make sense to be a mandatory SEID when safe to implement (post 24hr Holter, BP monitoring etc).
Yes, but we HAVE been shouting. There have been petitions, letter writing campaigns, protests, etc. That's where I felt discouraged by her suggestion. I agree that we have a new tool to refer to in this IOM report - and that it may help. I'm just not hugely hopeful that our pleas will be heard more now than ever. I hope I'm wrong about that. 
Yes, and see how long it takes for "systemic exertion intolerance disease" to be abbreviated in that way and demorbidified to "systemic exertion intolerance", just as CFS so often becomes plain Chronic Fatigue.
Oh wait, the BMJ have already done it.
In many quarters we still won't have a legit disease; we'll just be intolerant of exertion, i.e. lazy.
Plus ça change, plus c'est la même chose.
Oh wait, the BMJ have already done it.
In many quarters we still won't have a legit disease; we'll just be intolerant of exertion, i.e. lazy.
Plus ça change, plus c'est la même chose.
We need specialists, but we also need GPs able to recognise the basic picture, and manage it.
And, really, exactly what are specialists going to offer us, at this point in time? There are no serious treatments. All they can do is just confirm the GP's diagnosis, and help us with medico-legal stuff, which is fine as far as it goes.
And, really, exactly what are specialists going to offer us, at this point in time? There are no serious treatments. All they can do is just confirm the GP's diagnosis, and help us with medico-legal stuff, which is fine as far as it goes.