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

[A.B.]

The political arguments may much easier to win now that SEID is acknowledged to cause direct and indirect losses of $17-billion to $24-billion annually due to lack of adequate treatment.

 

[Sing]

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.

 

[Sean]

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.

 

[Sasha]

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

"The committee found that ME/CFS is a debilitating condition characterized by profound fatigue, pain, sleep disturbances, and post-exertional malaise, often accompanied by secondary depression or anxiety. "

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).

 

[Joss]

Thanks to the person who put the full BMJ article up.

 

[Scarecrow]

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...

page 32 of the download:

Although there was sufficient evidence with which to carry out the first steps of its task, the committee was struck by the relative paucity of research on ME/CFS conducted to date. Remarkably little research funding has been made available to study the etiology, pathophysiology, and effective treatment of this disease, especially given the number of people afflicted. Thus, the committee was unable to define subgroups of patients or even to clearly define the natural history of the disease. More research is essential.

No specific recommendations about funding but a damning comment nevertheless.

 

[Sean]

Symptoms can persist for years, and most patients never regain their premorbid level of health or functioning (Nisenbaum et al., 2000; Reyes et al., 2003; Reynolds et al., 2004).

 

[Sasha]

@charles shepherd - how do you see the implications for the UK of the new name and new diagnostic criteria?

 

[Sean]

Conclusion: The committee agrees that the term “chronic fatigue syndrome” often results in stigmatization and trivialization and should no longer be used as the name of this illness.

 

[Nielk]

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).

It is not exactly fair because the report lists over a dozen co-morbid conditions so why pick out these specific two?

 

[Sean]

Reliability

A lack of replication and validation in many studies limits the ability to assess the study findings critically. Few attempts have been made to follow up on or replicate intriguing findings in the literature to date.

 

[Cheshire]

http://www.medscape.com/viewarticle/839532#vp_2

Some of the comments show how this report is no magic wand...

 

[Nielk]

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.

 

[Sean]

In their review of 39 measures of fatigue, Whitehead and colleagues (2009) found that although some measures were better than others, none were ideal. Most measures have insufficient sensitivity and specificity to encompass all of the various and important aspects of fatigue in ME/CFS (Jason et al., 2011a). In addition, health care providers should note that a single assessment of fatigue severity may not provide a full understanding of the patterns of fatigue presenting over a day in ME/CFS patients (Jason and Brown, 2013).

 

[Research 1st]

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).

 

[Sing]

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.

My take is that Dr. Wright meant to encourage us. Now, for instance, instead of making pleas based either on just our own experience with this illness, or our own extremely difficult if not absolutely impossible attempt to pull together all the scientific information and evaluate it all ourselves and achieve legitimacy for that evaluation, now we have this report. Now we can cite chapter and verse. Now we have an organized, up to date set of information. Further, their report is designed to be simple, streamlined and useful for clinicians of all types and for potential researchers or research funders who need to review the state of knowledge prior to deciding on projects.

 

[Aurator]

systemic exertion intolerance - no thanks - sounds like something Gwyneth might have. An intolerance is not a real issue. People with food, drug intolerances are laughed at and told theey have psych disorders.

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.

 

[Sean]

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.

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.

 

[Nielk]

http://www.medscape.com/viewarticle/839532#vp_2

Some of the comments show how this report is no magic wand...

Wow. Read this terrific comment:

Dr. v m| Family Medicine6 minutes ago




I am a 45 yr old family physician with income of $200k + before I was struck with a flu, then this illness 3 yrs ago. I have been homebound since, unable to ride in a car to even less than 5 miles due to intense draining. Since then, unable to work due to this weakness, or play outside with my 8 yr old. Sold our 5 bedroom 3 bath home and moved into an apartment and back to an intern's salary (disability).



Will any of the naysayer physician colleagues here want to trade places with me?



First, do no harm. With your ignorance, and more appallingly, your unwillingness to even look at this illness, you are causing your patients extreme harm. It would help much better, if you rather say truthfully, that you are not aware of this illness or had much experience with it, so you are unable to help. Patients understand. This is not a time for your ego, peoples' LIVES are at stake here.



Nobody can know more about this illness than a physician with this illness. So, do not even pretend to know and dump it into a waste basket. Unfortunately, there are a lot of physicians like me. We are all willing to testify. ( I don't know if IOM included such physician-patients in their study. If they didn't, they should ).



My term for this illness would be PRAG, Prolonged recovery asthena gravis. Asthenia indicates extreme lack of strength, gravis, the serious nature of this illness, Prolonged recovery is the sine qua non of this illness, the recovery can be days, weeks, or years. There are many patients who have been home or bed bound for decades.



Naysayers, please refer to phoenixrising.me which has over 10,000 patients sharing their disabling illness, which is CFS/ME.

 

[Sean]

Summary [of Fatigue section]

Fatigue, chronic fatigue, and particularly the impact of fatigue on function should be assessed in making a diagnosis of ME/CFS. Health care pro- viders may use a range of questions and instruments to evaluate fatigue and its impact on function in these patients (see Chapter 7, Table 7-1). However, ME/CFS should not be considered merely a point on the fatigue spectrum or as being simply about fatigue. Experienced clinicians and researchers, as well as patients and their supporters, have emphasized for years that this complex illness presentation entails much more than the chronic presence of fatigue. Other factors, such as orthostatic intolerance, widespread pain, unrefreshing sleep, cognitive dysfunction, and immune dysregulation, along with secondary anxiety and depression, contribute to the burden imposed by fatigue in this illness. The challenge in understanding this acquired chronic debility, unfortunately named “chronic fatigue syndrome” for more than two decades, will be to unravel those complexities.