Is CDC Out to Bury PEM?

[WillowJ]

@Scarecrow I agree with you that PEM may be unrecognisable to the patient at some stages (though maybe with proper questioning we would notice), but I think the answer is: do like any other disease.

That is, make the criteria for the central hallmark features (in this case, including PER, cognitive dysfunction, sleep problems, and whatever else the biomedical researchers decide helps differentiate, when observed as a set).

When someone doesn't exactly fit, doesn't have a different diagnosis, and seems to fit the diagnosis in question, either give them an 'atypical' diagnosis or follow them in clinic and treat what you can and see what emerges.

 

[Gingergrrl]

@Scarecrow and @WillowJ I think that PEM has to remain in the definition of CFS even if there are different ways to qualify it. When I was at the more mild end of the spectrum, I could still work full-time but would go to bed as soon as I got home and rest the entire weekend b/c the fatigue was so severe. This all changed back in Feb and I have now been on medical leave for six months and am basically housebound. I have PEM from the most minimal exertion and have not done any real exercise in over four years b/c my body is completely unable.

ETA: I feel like the generic symptoms of fatigue, insomnia, muscle pain, nausea, sore throat, etc, can overlap with a million different illnesses but PEM is unique to CFS and cannot be taken out of the definition.

 

[heapsreal]

Fatigue and pem can be accumulative and one can be in a constant state of pem too? ?

I think the constant pem is common in those that work especially when in bed when not at work and then notices improvement when they get 2 weeks off. Maybe it's the constant pem that causes many to crash ie straw that broke the camels back? ?

 

[Gingergrrl]

Fatigue and pem can be accumulative and one can be in a constant state of pem too? ?

I think the constant pem is common in those that work especially when in bed when not at work and then notices improvement when they get 2 weeks off. Maybe it's the constant pem that causes many to crash ie straw that broke the camels back? ?

@heapsreal I definitely think if I had taken more time off work to rest while I had active mono, that I may not be in my current position (although we will never know.) I felt compelled to return to work after six weeks (although still quite ill from mono) and not only worked full-time in a demanding job but was simultaneously planning my wedding and a move. I pushed through it no matter how tired I was and really regret that and now I will most likely never be well enough to work again. I knew nothing about CFS, rest or pacing at the time. No job is worth your health/future but I did not understand that at the time.

 

[Scarecrow]

@Scarecrow and @WillowJ I think that PEM has to remain in the definition of CFS even if there are different ways to qualify it. When I was at the more mild end of the spectrum, I could still work full-time but would go to bed as soon as I got home and rest the entire weekend b/c the fatigue was so severe. This all changed back in Feb and I have now been on medical leave for six months and am basically housebound. I have PEM from the most minimal exertion and have not done any real exercise in over four years b/c my body is completely unable.

Your experience is exactly why I pall at the thought of any kind of mandatory CPET for a diagnosis. You are in no condition for it and I would hate to think that you could be forced into it. Six months ago we were probably in much a similar state but while you have sadly taken a turn for the worse, I am a little improved although still not fit for any kind of a social life. I'm not sure what I would do if I had to undergo a CPET for a diagnosis. Would I risk it?

 

[Gingergrrl]

Your experience is exactly why I pall at the thought of any kind of mandatory CPET for a diagnosis. You are in no condition for it and I would hate to think that you could be forced into it. Six months ago we were probably in much a similar state but while you have sadly taken a turn for the worse, I am a little improved although still not fit for any kind of a social life. I'm not sure what I would do if I had to undergo a CPET for a diagnosis. Would I risk it?

@Scarecrow, I definitely do not think that CPET testing should ever be mandatory for anyone. It should always be optional IMO and there is no chance on earth I could do it now. I would stand up from the chair and sit down at the bike and my heart rate could be over the V02 max (or whatever the proper term is!) My feeling is that PEM must be kept in the definition but CPET testing should always be optional.

 

[WillowJ]

@Scarecrow and @WillowJ I think that PEM has to remain in the definition of CFS even if there are different ways to qualify it. When I was at the more mild end of the spectrum, I could still work full-time but would go to bed as soon as I got home and rest the entire weekend b/c the fatigue was so severe. This all changed back in Feb and I have now been on medical leave for six months and am basically housebound. I have PEM from the most minimal exertion and have not done any real exercise in over four years b/c my body is completely unable.

ETA: I feel like the generic symptoms of fatigue, insomnia, muscle pain, nausea, sore throat, etc, can overlap with a million different illnesses but PEM is unique to CFS and cannot be taken out of the definition.

That's basically the same as I was saying. (I am not certain PEM is unique--probably if it's defined carefully, but certainly in a complete picture with other things it should be possible to make a positive [we think this is what is wrong], rather than negative [well, it's not anything else we could find] diagnosis)

sorry to you and all who suffered by not knowing. I count myself among those.

 

[*GG*]

@Scarecrow, I definitely do not think that CPET testing should ever be mandatory for anyone. It should always be optional IMO and there is no chance on earth I could do it now. I would stand up from the chair and sit down at the bike and my heart rate could be over the V02 max (or whatever the proper term is!) My feeling is that PEM must be kept in the definition but CPET testing should always be optional.

I don't see how this testing would be Required, since the first thing with medicine is "Do no harm", this test would not be needed for treatment purposes, at least not that we know of at this time!

GG

 

[taniaaust1]

Of cause the CDC is out to bury it. When havent they been out to not bury ME? (What big insurance company is handing out money to the CDC to bury ME?).

Thanks Mindy - this makes me feel sick. And there IS an easy way to quantifiably measure PEM: The 2-day exercise stress test protocol devised by the Fatigue Lab at the University of the Pacific in Stockton - they found extreme debilitation in CFS patients on day 2 of the test unseen in any other illness and they could measure it, people on the verge of heart failure doing a second stress test the day after the first.

Mary

Every other illness has its own tests for diagnoses. So why dont we have a 2 day exercise test?

If such a simple thing is all too hard for Dr Beth Unger to understand, she shouldnt hold the job has and certainly shouldnt have any involvement with ME/CFS.

 

[taniaaust1]

Can we start writing to every senator, send letters. What can we do???

And in those letters we should be saying.. that the CDC's head of CFS research Dr. Beth Unger needs to be pulled from the position as she's completely useless at this job as indicated by the stupid stuff she comes up with. No way to measure PEM.. bullshit! Many people new to this illness seem to know more about it then she does.

 

[*GG*]

If such a simple thing is all too hard for Dr Beth Unger to understand, she shouldnt hold the job has and certainly shouldnt have any involvement with ME/CFS.

She probably holds her job BECAUSE of what they know she will not accomplish, why do you think nothing really significant has happened in over a Generation!!

GG

 

[taniaaust1]

She probably holds her job BECAUSE of what they know she will not accomplish, why do you think nothing really significant has happened in over a Generation!!

GG

Yeah. I actually think that too.

 

[Scarecrow]

I don't see how this testing would be Required, since the first thing with medicine is "Do no harm", this test would not be needed for treatment purposes, at least not that we know of at this time!

GG

But that's not really how CPET was introduced to the discussion. Somebody mentioned that it was easy to quantify PEM using a CPET. Well, it's certainly not what I would call 'easy' (even if I accepted that it directly quantifies PEM), although I know it won't be exactly what was meant by 'easy'. Other people on the thread support the theory that CPET quantifies PEM and, therefore, Unger must be wrong and even that she has ulterior motives. It has been suggested that an imperfect test is better then no test. Well, I definitely agree with that for the purpose of research.

I listened to Unger when she made the comment and I was confused and concerned at the time. I've just gone back to Mindy Kitei's blog and read again what Unger actually said and it's now making more sense to me. "My concern about making post-exertional malaise an absolute criteria for diagnosis is if you don't have a consistent, validated way of measuring it that clinicians can use easily, it's big barrier,". She is talking specifically about a diagnosis, she is not talking about a definition nor about research - if we take her at face value.

I now find I agree with Unger.

Is anyone prepared to disagree with her? Is there 'a consistent, validated way of measuring it that clinicians can use easily'? Please tell me it isn't CPET.

Here's another thing to think about. Does Unger believe 'first do no harm' with regard to CPET and is that why she's against the 2 day CPET for trial purposes?

I'll get my coat.

 

[Valentijn]

Is anyone prepared to disagree with her? Is there 'a consistent, validated way of measuring it that clinicians can use easily'? Please tell me it isn't CPET.

No, there isn't. But nor is there an objective way to measure "fatigue", yet the CDC morons want ME/CFS to have fatigue as the core requirement for diagnosis.

There's an easy way to find out if someone has PEM, without the two-day CPET. You describe PEM to the patient, and then you ask them if they have it - exactly the same approach that they use with "fatigue". But with the added bonus that PEM is an essential and unique aspect of ME/CFS, whereas "fatigue" is a sloppy term which is often explained by the effects of OI or PEM or a million other things.

I don't have "fatigue". I do have PEM. Hence I would prefer a ME/CFS diagnostic definition which focuses on PEM, not fatigue. If they continue to omit PEM as a core concept, patients will continue to ignore and distrust them.

 

[Nielk]

Of cause the CDC is out to bury it. When havent they been out to not bury ME? (What big insurance company is handing out money to the CDC to bury ME?).
.

The government agency - Medicare, is the largest insurance company in the country.

 

[Seven7]

What we need is to list diseases that have symptoms that are patient reported and they don't test for it. I know there are not biomarkers for a lot of stuff yet they are part of definitions.

 

[Ren]

Not sure if this is helpful, but...

The NY Times health section has an article called, "The Well Guide to Activity Trackers" - to be updated "regularly as new trackers and features are tested." (Last updated 14 June 2014)

From the CFS Central post: "...using a pedometer like the Fitbit would also work...." And "...the authors cite actigraphy and pedometers for activity assessments."

The NYT article actually mentions the Fitbit.

Would it be helpful for the ME/CFS community to reach out to one or more of these companies?? To explain how a device has helped/been particularly useful and how this usefulness is being threatened?? Just a thought...

http://well.blogs.nytimes.com/projects/activity-trackers
http://www.cfscentral.com/

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Edit: "BI Intelligence believes fitness bands and activity trackers will be the devices that bring wearables to the mainstream market. But thus far sales of these devices have been disappointing, and this poses some concern for the category as a whole."

Sales were at 3.3 million in the U.S. for one year. (Compare to one million US individuals ("consumers") with ME/CFS.)

http://www.businessinsider.com/33-m...-the-us-in-the-past-year-2014-5#ixzz370kAjRdj

 

[Seven7]

@Ren is Fitbit contimious heart Rate monitoring?

 

[anciendaze]

Elsewhere, I've suggested a measure which I long-ago found useful, when I was able to manage this disease on my own without interference from doctors. I will not pretend that this is not subject to terrible misinterpretation. If the prescription is more exercise, all evidence will be used to support this, ignoring the fact that the patient came to the doctor because of exercise intolerance.

If anyone were paying attention to patients, they would note that ME/CFS patients can achieve very high heart rates without doing anything difficult, and that HR recovery times remain long, or get longer, despite significant periods of high HR activity. Clumsy use of beta-blockers to lower HR can result in patients becoming essentially bed-bound, if cardiac output is low. Cardiac output is seldom actually measured, and in the vast majority of cases it is measured with the patient supine. This is not appropriate when dysautonomia leads to orthostatic intolerance, but dysautonomia can be misinterpreted as an emotional problem. ("Do you want to talk about the childhood trauma that causes your hands to turn cold and white?")

When I ended up in the ER, after an expensive ambulance ride, they ran a series of tests which showed I was fully qualified to remain lying down for the rest of my life. If I actually limit myself to those test conditions, I am said to have a psychological problem. If doctors try a bunch of half-assed ideas, and I don't respond the way they prefer, I am labeled "treatment resistant".

This is an intellectual squirrel cage which will keep running until the patient dies, or it ceases to produce income.

 

[Ren]

@Ren is Fitbit contimious heart Rate monitoring?

Sorry, I don't know.

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As an added note/footnote though to my earlier post regarding medical devices, there's a website, Medical Device Daily, which seems to describe itself as the be-all end-all in medical device info.

Also of note is that this publication was recently purchased by Thomas Reuters. And of further note, cortjohnson.org recently featured a Reuters piece questioning why ME/CFS is so poorly funded. (I haven't yet read either piece.)


http://www.medicaldevicedaily.com/servlet/com.accumedia.web.Dispatcher?next=aboutUs
http://www.medicaldevicedaily.com/servlet/com.accumedia.web.Dispatcher?next=contact

http://www.cortjohnson.org/blog/201...alist-takes-chronic-fatigue-syndrome-ignored/

http://blogs.reuters.com/edward-hadas/2014/06/11/market-failure-can-be-sign-of-fatigue/