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

[dancer]

Lots to process, which my brain can't handle right now.

For me one of the positives was the passion in the IOM presenters voice (conveying a sense of being appalled at what patients have endured, lack of funding, stigma, etc.)

and one of the negatives is that she tells patients to "ACT-UP" now that they have the IOM report to help.

I feel the same frustration as when Dr. Lipkin encouraged that. Healthy powerful people find out how marginalized we have been...and are troubled by that (good! I'm glad they are noticing) but then they suggest we fight the government injustice - which we've tried to do for years and in a variety of ways.

 

[Valentijn]

I wonder what will happen with GWS patients now. Are they stuck with the crap treatments IOM described for them, or can they avoid psychological treatment by sidling into the ME/SEIDS description? Symptoms are identical, after all.

 

[Research 1st]

27 years after the cruel introduction of CFS, The 'F' word (fatal) is still not permitted to be spoken by US Govt officials regarding ME CFS.

RE: IOM on SEID from todays PDF documents downloadable from their website:

They say it can ''last for years''.

Actual ME CFS reality: ME CFS can last for decades, and in some cases be fatal.

Not mentioned in the SEID.

After all the millions of dollars, the best they can come up with is:

''may last for years''.

Incredible.

 

[Nielk]

My quick assessment is that the IOM criteria is a simplified CCC without pain. Had HHS listened to CFSAC and our experts 18 months ago, we could have saved a million dollars. In any case, government health agencies should not be sponsoring the setting of criteria for disease. It should come from the expert medical field.

 

[Sidereal]

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?

 

[Valentijn]

and one of the negatives is that she tells patients to "ACT-UP" now that they have the IOM report to help.

I don't think that's a bad thing ... they weren't blaming us for the problems. Rather they were pointing out that this report gives us a nice platform to start shouting from. And if CDC or the NIH don't start to take the disease seriously and implement some serious changes, then we should be shouting, even if it's just online.

The alternative message in the past has been "shut up and cure yourself". So I think that encouraging us to act up is a very clear statement that we have something to be legitimately angry about.

 

[user9876]

Lots to process, which my brain can't handle right now.

For me one of the positives was the passion in the IOM presenters voice (conveying a sense of being appalled at what patients have endured, lack of funding, stigma, etc.)

and one of the negatives is that she tells patients to "ACT-UP" now that they have the IOM report to help.

I feel the same frustration as when Dr. Lipkin encouraged that. Healthy powerful people find out how marginalized we have been...and are troubled by that (good! I'm glad they are noticing) but then they suggest we fight the government injustice - which we've tried to do for years and in a variety of ways.

Act up can just mean getting noticed. Perhaps reminding politicians that there are a significant number of people with ME along with their families who can and do vote.

 

[dancer]

I don't think that's a bad thing ... they weren't blaming us for the problems. Rather pointing out that this report gives us a nice platform to start shouting from. And if CDC or the NIH don't start to take the disease seriously and implement some serious changes, then we should be shouting, even if it's just online.

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.

 

[eafw]

if we say freely we have 'orthostatic intolerance' and don't fear people will assume that means 'just too lazy to stand upright'. Why would we worry the word intolerance would be read as 'lazy' here and reject the new name as a result?

Because there's no real choice in an orthostatic reaction but people will read "exertion" as a choice. It means effort. We therefore just need to get used to making more effort or learn to tolerate exertion .. and in step the psychs to teach us the error of our ways.

 

[Nielk]

Penny Swift on the IOM report.

http://theargusreport.com/iom-wants...o-systemic-exertion-intolerance-disease-seid/

 

[Anne]

British Medical Journal: http://www.bmj.com/content/350/bmj.h775

US panel proposes new name and diagnostic criteria for chronic fatigue syndrome

Here's the BMJ article. They did a bit of their own take on it, emphasizing depression and anxiety (surprise....)

The condition known as myalgic encephalitis (ME) or chronic fatigue syndrome (CFS) is a serious, chronic multisystem disease that can cause significant impairment and disability, an expert panel convened by the US Institute of Medicine has concluded in a new report.1 “In its most severe form, this disease can consume the lives of those whom it afflicts. It is ‘real,’” the committee wrote.

The institute commissioned the committee to develop evidence based diagnostic criteria for ME/CFS but not to investigate the causes, pathophysiology, pathogenesis, or treatment of the syndrome. The committee’s chair was Ellen Wright Clayton, a professor of pediatrics and a professor of law at Vanderbilt University in Nashville, Tennessee.

 

[Scarecrow]

Because there's no real choice in an orthostatic reaction but people will read "exertion" as a choice. It means effort. We therefore just need to get used to making more effort or learn to tolerate exertion .. and in step the psychs to teach us the error of our ways.

And one of the treatments for some forms of orthostatic intolerance is tilt training, building up the number of minutes each day. Remind any one of anything? Just as we can train you to tolerate being upright, we can train you to tolerate exertion. (Edit: I have just realised that the last part of my post is the point that you had already made. )

 

[MikeJackmin]

I'd just like to say that many of us were concerned about how badly they might have screwed this project up, and now that I see the results, I am very pleasantly surprised. Other than another imperfect name, we got most of what we most wanted to see.

 

[Valentijn]

Because there's no real choice in an orthostatic reaction but people will read "exertion" as a choice. It means effort. We therefore just need to get used to making more effort or learn to tolerate exertion .. and in step the psychs to teach us the error of our ways.

Exercise intolerance is a well-documented problem in many diseases, especially mitochondrial ones. There's no suggestion of a lack of effort.

 

[Debbie23]

Because there's no real choice in an orthostatic reaction but people will read "exertion" as a choice. It means effort. We therefore just need to get used to making more effort or learn to tolerate exertion .. and in step the psychs to teach us the error of our ways.

And one of the treatments for some forms of orthostatic intolerance is tilt training, building up the number of minutes each day. Remind any one of anything? Just as we can train you to tolerate being upright, we can train you to tolerate exertion. (Edit: I have just realised that the last part of my post is the point that you had already made. )

Ah I see, I was figuring since I'm sure I heard them mention CPET and they stressed that even mental exertion can trigger us becoming worse that the fact it's not in our control in this way would be made clear. Maybe I'm being naive.

Thank you for the responses though, mine brain is tired and I'm struggling to sort out what I think.

 

[Debbie23]

Exercise intolerance is a well-documented problem in many diseases, especially mitochondrial ones. There's no suggestion of a lack of effort.

So I suppose it comes down to the report and the guidelines for clinicians they were talking about and what they say in there?

How they make their stance clear I mean?

 

[Research 1st]

Is it accurate someone said in a Q&A on the IOM report we can give blood?
Source:
http://www.mecfsforums.com/index.php/topic,21784.msg167901.html

If so, this doesn't make sense. CFS research has shown us ME CFS patients can carry many infectious agents to the point you run out of paper to write on. Basically, we're like mini AIDS patients.

Someone break out the iPhone and Youtube account and go down their local donor center with your local news reporter if that's correct. I'm sure they'll turn you away if you say you have chronic fatigue syndrome or ME.

Donating blood if you have ME CFS or SEID, makes the UK's PACE trial look like a form of safe holistic therapy. (Some healthy become patients from developing CFS, post receiving blood). There was a court case I think, in the US.

In the UK, from 2010 ME Association:

People with ME/CFS to be permanently excluded from giving blood in the UK from 1 November this year – Department of Health announcement

The Department of Health has decided to ban blood donation permanently from all prospective donors in the UK who report they have had ME/CFS from 1 November this year. The decision was announced in an email sent to The ME Association today by the Department’s Director of Health Protection.

EXCHANGE OF CORRESPONDENCE BETWEEN THE ME ASSOCIATION AND THE CHIEF MEDICAL OFFICER: PROFESSOR DAME SALLY DAVIES

Resulting in the introduction of a new blood donation policy for ME/CFS as from 1 November 2010

Source: http://www.meassociation.org.uk/201...-this-year-department-of-health-announcement/

So does the American position differ?

 

[August59]

I would like pain to be in the primary diagnostic criteria. Major symptom for me, always has been.

But I have not read the full report yet, so they may discuss that in there. (Be surprised if they don't.)

Amen!!!

 

[Sean]

I don't think that's a bad thing ... they weren't blaming us for the problems. Rather they were pointing out that this report gives us a nice platform to start shouting from. And if CDC or the NIH don't start to take the disease seriously and implement some serious changes, then we should be shouting, even if it's just online.

The alternative message in the past has been "shut up and cure yourself". So I think that encouraging us to act up is a very clear statement that we have something to be legitimately angry about.

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.

 

[jimells]

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, it's disappointing that they didn't include a funding recommendation. Since it isn't "part of our mandate" a strong statement like "We recommend X million dollars over the next Y years" would stand out even more. Sadly, bureaucrats seldom bite the hand that feeds, unless they're trying to make the Boss look bad so they can be the Boss instead...