Release of the IOM report - live webcast-2/10/2015

[Gingergrrl]

Is anyone else suffering from information overload? My head is spinning!

Yes and I am going to have to take a break from reading all this soon and come back to it later!

 

[Sasha]

@Sasha, I just posted this in a new thread and didn't know that you had posted it! Hopefully the moderators can combine them together! Sorry!

No probs! We seem to be getting quite a few threads on the IOM report - @Kina, do you think it would make sense to combine them all to keep all the discussion in one place?

 

[Valentijn]

It is a little concerning that Simon is somewhat on board.

He's a politician who pretends to be a doctor. Openly opposing the report produced on behalf of a government agency would make him look like a jackass. So he's lying through his teeth to advance his own image, as is par for the course.

 

[snowathlete]

Haven't read it all, or all of this thread, but I think the name is a step forward, on balance.
Although I dislike the word intollerance because it doesn't sound that serious, it is clearly very linked with the previous word, Exercise and that is an absolute disaster for those promoting GET. The new name says that patient's can't tollerate exercise, it's aimed at them, and thus the idea of a treatment involving exercise is a bad idea. I also like the acknowledgement that it is a systemic disease, we haven't just got fatigue in muscles. I'm surprised by the word Disease being present. But it is welcome and ought to be helpful.

It's about time that the psychobabble nonesense DIES a death so let's hope SEID helps that happen. They won't go down without a fight though. They will find new angles and if the UK accepts the new label, which I think they will have to eventually, they will do all they can to get on the panels of people implementing any associated changes. Our job in the UK is to stand against that, this report supports patient's long-held views that psyciatry has no place in our disease, so let's not let them try and corrupt what could be positive change.

EDIT: Simon et al endorsing the report is exactly what I expect. Their aim at damage limitation will be for the name to change while everything else stays the same. In public they will be seen to be offering no resistance, rather helping things on their way. But they want to manage the situation, they have a lot of money to lose from this if they don't. They will say that they have been calling for this for a long time, that it is a great step forward and that they are pleased to see the IOM agreeing with them that exercise is a big problem in the disease and that they have a lot of knowledge and experience in that area and look forward to a renewed interest in helping these patients regain their tollerance to exercise.

 

[Sidereal]

The committee also rejected the term myalgic encephalitis because, although it is preferred by many patients and advocates, the committee found insufficient evidence of brain inflammation in patients with ME/CFS and because myalgia plays a less prominent role in these patients than the core symptoms identified in the report.

I find it hard to believe that pain isn't a prominent symptom for the majority of us.

 

[Sean]

Yep. 5am here. Me all burned out. Off to bed.

Pretty happy with the result, all things considered, certainly nothing for us to be afraid of. Though the name thing is going to need some work, and I hope any clinical definition and treatment recommendations address pain issues, regardless of where it fits in the diagnostic schemata.

But that can wait a day or three.

 

[alex3619]

Psychobabblers will probably invent some new condition only they understand.

You give them too much credit. Do they understand even their their own definitions?

 

[Antares in NYC]

http://www.newscientist.com/article...drome-gets-yet-another-name.html#.VNpXfC6AmSo


Simon Wessely at King's College London welcomes the criteria, but is less convinced by the name-change. "I'm concerned it may add to, not reduce, confusion around this condition," he says.

....Unlike, say, the work of Sir Wessely himself. Right?

I wonder if his infamous comedic impersonations and colorful parodies of ME/CFS patients that he (allegedly) often performed to other doctors added, not reduced, confusion about this condition.

 

[alex3619]

I don't understand the USA process for adopting recommendations.

Who decides whetherto adopt this not?

Its a bureaucratic process. I expect we will see another ad hoc committee soon.

 

[Sean]

One last comment, on the name: We are running into the limits of what language can do for us. I have tried for many years now to come up with something that was technically accurate and relatively specific, and have not succeeded. My preference remains what it always has been: Ramsay's Disease, with a more technical label to follow after adequate research.

 

[caledonia]

Got this in an e-mail from CFSAC listserv

So will the CFSAC be renamed the SEIDAC?

 

[alex3619]

So, the key question, are ya'll going to rename the subtitle of the forum or are we just going to ignore this latest name?

Our focus is yet to be decided. Its too soon anyway, we need time to absorb the new info and discuss it.

 

[alex3619]

That is my take on it.

We have already won the scientific and ethical arguments, but still needed to win the political argument, and now we have a major club to help us with that.

Seconded.

 

[Sasha]

Haven't read it all, or all of this thread, but I think the name is a step forward.
Although I dislike the word intollerance because it doesn't sound that serious, it is clearly very linked with the previous word, Exercise and that is an absolute disaster for those promoting GET.

Just to be picky, it's 'exertion' intolerance, not 'exercise' but you point holds, of course.

I think a key thing is that it's a 'systemic disease', which is clearly a serious thing to have. If someone says, "Well, I don't tolerate exertion either, ho ho," I think it's a straightforward matter to just say, 'Do you understand what a systemic disease is? Do you realise that that's a serious thing?' I don't think there's any possible hilarious comeback to that.

As a placeholder name (until the research gets us a better one), this is a HUGE improvement on 'CFS'.

 

[August59]

Thank you for that image! The crowd with pitchforks and torches. Yes, that is the spirit. We need to get a hold of the information in this report and USE IT. This means arguing with snide detractors, entrenched deniers, people like Wessely who has caused so much confusion and damage to patients himself. Naturally we are going to get a lot resistance but we must not give up. Let's encourage ourselves and each other to use what we have in this report.

Amen to that too!!

 

[Valentijn]

I find it hard to believe that pain isn't a prominent symptom for the majority of us.

The problem might be that pain isn't specific enough to ME/SEID to be a useful major criteria.

 

[Nielk]

Clearly, to me, the major coup of this report is that it leaves all the psychobabble out. Kudos to the panel for that.

 

[August59]

I find it hard to believe that pain isn't a prominent symptom for the majority of us.

Me too! It is in my my top 5 and has been No. 1 at times, thankfully not at the moment. It will be back and I'm very sure of that!

 

[alex3619]

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.

That is a failure of the original scope, of a badly researched question. I am not sure this report was ever intended to cover that question.

 

[Sidereal]

The problem might be that pain isn't specific enough to ME/SEID to be a useful major criteria.

Well, exercise intolerance isn't specific either. I am concerned that now that pain has been relegated to minor symptoms physicians trained on this new disease definition will under-treat pain because surely it can't be that bad and the patient must be exaggerating/drug seeking.