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

[CantThink]

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.

It's not a real thing anymore than CFS.

From biology online, a definition of intolerance:



I'm not sensitive to exertion, or unable to tolerate it. I have a neuroimmune disease, of that I am sure. It is the inability to fight off infections that has led to pneumonia twice in 6 years, and the terrible neurological symptoms that are so awful - not 'cognitive' problems but myoclonus, seizures, ptosis and palsy's, burning sensations, nerve damage, problems with swallowing, gut problems, multiple allergies the list goes on.

I can just see me explaining to someone who says 'so why are you in a wheelchair?'
'Er, umm, I have a sensitivity to exertion'

I agree.

I think part of the problem is the fact they don't know why... Cos if you think about MACD (Mast Cell Activation Disorder) the mechanism of what is wrong/causing the symptoms creates the name...

I really don't want to have to say SEID. It just sounds like we are intolerant to activity, when as you said, we are not... There is so much more to it... I can lie here doing no activity other than breathing etc and I'm still as ill as ever... Maybe I'm just intolerant to life.

 

[Valentijn]

Can someone help me with this?

I need picture 18 (the Diagnostic Algorithm) as a separate file (so, a PP with only one page):
http://www.iom.edu/~/media/Files/Report Files/2015/MECFS/MECFS_Powerpoint.pdf

Open the document to the page you want, hit the PrntScr (Print Screen) button on your keyboard, open Paint (included on all windows machines, under "Accessories" in the Programs menu), paste, and crop the image. "Save as" generally works best with .gif for drawn-type graphics, or .jpg for photo-type graphics.

 

[alex3619]

On the plus side when someone does an online search for SEID in the near future, they will get a fresh set of information.

We did need a new name. This is not great, but none of them are. This name will go too when the science is done.

 

[Sidereal]

From the full report:

In 1970, two psychiatrists in the United Kingdom reviewed the reports of 15 outbreaks of benign myalgic encephalomyelitis and concluded that these outbreaks “were psychosocial phenomena caused by one of two mechanisms, either mass hysteria on the part of the patients or altered medical perception of the community” (McEvedy and Beard, 1970, p. 11).

They based their conclusions on the higher prevalence of the disease in females and the lack of physical signs in these patients. The researchers also recommended that the disease be renamed “myalgia nervosa.” Although these findings were strongly refuted by Dr. Melvin Ramsay, the proposed psychological etiology created great controversy and convinced health professionals that this was a plausible explanation for the condition (Speight, 2013).

Over time, Dr. Ramsay’s work demonstrated that, although this disease rarely resulted in mortality, it was often severely disabling, and as a result, the prefix “benign” was dropped (Ramsay, 1988a; Ramsay et al., 1977; Wojcik et al., 2011). In 1986, Dr. Ramsay published the first diagnostic criteria for ME, a condition characterized by a unique form of muscle fatigability whereby, even after a minor degree of physical effort, 3 or more days elapse before full muscle power is restored; extraordinary variability or fluctuation of symptoms even in the course of one day; and an alarming chronicity (Ramsay, 1986).

Despite Dr. Ramsay’s work and a U.K. independent report recognizing that ME is not a psychological entity (CFS/ME Working Group, 2002), the health care community generally still doubts the existence or seriousness of this disease. This perception may partly explain the relatively limited research efforts to study ME in fields other than psychiatry and psychology.

They could have called it Ramsay's disease.

 

[Sean]

re pain

...as well as the less prominent role of myalgia in these patients relative to more core symptoms.

•••••••••••••••••

I am also not sold on the SEID name, though I do think they are heading in the right direction. Apart from any other reason, it is a mouthful.

Seh-Id
Say-Id
Sayd

???

•••••••••••••••••

Anne, the image itself is here:

http://www.iom.edu/~/media/Files/Report Files/2015/MECFS/MECFS_DiagnosticAlgorithm

 

[Christopher]

Do a Google image search for SEID, it's most inappropriate

I approve.

 

[Sean]

They could have called it Ramsay's disease.

I believe medicine is trending away from naming diseases after people, and towards primary symptoms or causes

 

[A.B.]

It will make it a lot harder for them to justify using Fukuda. And since so many researchers around the world did use the CDC definitions in the past, it seems reasonable that they'll use the new definition in a similar fashion.

The rest of the world will probably adopt it. It's in their interest to adopt this definition because both parties will benefit from each other's research, and treatment can be based on a larger body of evidence. This is assuming SEID becomes the de facto new definition in the US.

Psychobabblers will probably invent some new condition only they understand.

 

[Sing]

I feel it is very important for us to know what is in the IOM report. I am not saying to read the whole thing today. But we need to know because when the NIH or CDC or FDA or HHS or any other official body in the US govt starts to implement policies, to fund research, etc., we now have the tool of this report to hold their feet to the fire if they don't change their ways and just go down the old useless paths. We have a tool here but if we don't know what is in it we will not be able to use it.

 

[Wally]

I am not excited, happy, or thrilled about the Report because I have not yet had an opportunity to read the Report. In my opinion, it was not released to the Public with sufficient time for patients or others to be able to absorb a 300 page report that was released minutes before the Webinar started.

In addition, I was not able to find any notation on my screen as to where I could write a question about the information presented during the Webinar. I was in the process of trying to figure this out by contacting the IOM and by posting this problem on the Forum while the Webinar was going on. Thank you to the Forum member(s) who suggested refreshing my screen (I had tried this already several times and no arrow appeared). On the fourth try, the magical yellow arrow made an appearance. I immediately started typing in my questions and a response came up on the screen appearing to note that my questions had been received and were "awaiting moderation". The questions were in this que for over 5 minutes, when the Webinar ended because they thought there were no additional questions??? Very frustrating process to say the least.

I am also not thrilled by the recommended name change, I believe there should have been much more dialogue with the ME/CFS community by the IOM before recommending a completely new name. I think the Committee could have recommended that the name be changed, but it did not appear to me that the Committee sought out enough information and concerns with recomending a new name outside of the two names that are presently used for this illness here in the U.S. and in other countries (C.F.S. and M.E.). Before making up a new name and announcing this recommendation, I would have wanted a much more thorough discussion with the ME/CFS community about re-naming the illness.

For anyone who is interested, these are the two questions that were accepted through the use of the Webinar Question button, but for some reason were never presented to the Webinar panel.

My name is Susan Kreutzer. I am a patient with this illness.
Question - Did the Committee make any specific recommendations for funding needed for research and outreach for this illness?
by susan kreu... 32 minutes ago comment awaiting moderation
____________________________________________
My name is Susan Kreutzer. I am a patient with this illness.
Question - Is the name S.E.I.D. a recommendation for a name change for this illness by the Committee? If yes, can you explain the approval process required to change the name to the Committee's recommended name?
by susan kreu... 35 minutes ago comment awaiting moderation

I was typing my third question when they ended the webinar.
:thumbdown:

 

[waiting]

The Wikipedia entry for "chronic fatigue syndrome" has not been updated yet.

 

[Nielk]

From the full report:



They could have called it Ramsay's disease.

That was my choice. I feel that with SEID Systemic Exertion Intolerance Disease, people are left to believe that we only have problems when we exert ourselves. Otherwise, we are completely healthy. Which is really not the case. Most of us feel sick all/most of the time with pain/weakness etc... When we exert ourselves, everything gets worse. The only part that I like is that they added "disease". The rest still sounds a if we are lazy.

 

[Jim]

Are you awake? Did you get out of bed? The most sick may be overexerting just being awake, breathing and eating. Post exertional issues are hallmarks, not the only symptoms.

I am bedridden and getting food is already hugely over-doing. was referring to cases where even with total rest (for their status of energy) they still have fevers, swollen glands, etc.

 

[Sean]

The direct and indirect economic costs of ME/CFS to society are estimated to be between $17 and $24 billion annually (Jason et al., 2008), $9.1 billion of which can be attributed to lost household and labor force productivity (Reynolds et al., 2004).

 

[Tammy]

Are you awake? Did you get out of bed? The most sick may be overexerting just being awake, breathing and eating. Post exertional issues are hallmarks, not the only symptoms.

We know what exertion means to us............but to most others exertion will not be equated with simply things like getting out of bed or walking across the room............or any other simple activity......that's part of the reason I don't like the title they have chosen.

 

[Sidereal]

I believe medicine is trending away from naming diseases after people, and towards primary symptoms or causes

Right, but with this disease we still have the problem of unknown aetiology so you end up with unserious sounding names if you focus on the cardinal symptom of fatigue/exertion intolerance/malaise/whatever. I just think that something totally neutral would have worked better. Probably everyone in the community can get behind the late Dr Ramsay who was there in the trenches, staunchly anti-psychobabble and really the dude who put this disease on the map. Personally, his case definition even all these decades later is the one that speaks to me the most, whereas when I read Fukuda or Oxford it doesn't sound like what I have at all.

 

[Lynn]

Can someone help me with this?

I need picture 18 (the Diagnostic Algorithm) as a separate file (so, a PP with only one page):
http://www.iom.edu/~/media/Files/Report Files/2015/MECFS/MECFS_Powerpoint.pdf

Could someone do that? If so, please email it to me at anne.ortegren (at) comhem.se

Thanks!

Here is a PDF of the Algorithim.

Lynn

 

[Joss]

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

Who decides whetherto adopt this not?

 

[Debbie23]

Can I just ask, sorry if this is clumsy, bad brain today. But 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?

Sorry for poor wording, my brain is tired. I'm just trying to decide what I think about the new name and I'm curious as to what other people think.

 

[Sidereal]

I am bedridden and getting food is already hugely over-doing. was referring to cases where even with total rest (for their status of energy) they still have fevers, swollen glands, etc.

Sorry to hear you're so ill. I've been to the awful place you describe. Metabolic activity is very energetically expensive. For some of us I think the energy required to maintain enzymatic activity, body temperature, pH etc. is enough to keep us permanently in PEM.