Is CDC Out to Bury PEM?

[Mindy Kitei]

At CFSAC last month, Dr. Beth Unger seemed determined to quash PEM as a requirement for ME.

At CFS Central
www.cfscentral.com

Mindy Kitei

 

[shahida]

Oh dear. PEM is perhaps one of the things in a clinical setting that distinguishes us from 'fatigue' 'depression' etc. Maybe that's why the psychos don't seem to acknowledge it- PEM doesn't sit well with their theories, although im sure they could make something up. Great work, Mindy

 

[Nielk]

From Mindy's blog:

CDC's head of CFS research Dr. Beth Unger said at last month's Chronic Fatigue Syndrome Advisory Committee meeting that she couldn't figure out how to measure post-exertional malaise (PEM)--the hallmark of ME--and thus believes problems would ensue if PEM is a mandatory symptom.

"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," Unger explained at the meeting. A few minutes later, when committee member Donna Pearson asked again about PEM being included in the criteria, Unger replied, "I think everybody agrees that it's very characteristic and a very important symptom, and clinicians will tell you that they can recognize it, they can illicit this information from patients, but to make that quantifiable and to make it easily implementable is another question...."

(my bold)

Yes, this makes a lot of medical sense. If regular clinicians can't easily quantify it themselves, it cannot be used as an official symptom of the disease? She doesn't say it is impossible...only that it is not easy. Why does the CDC's Beth Unger keep insisting to leave this hallmark symptom out when she herself very well knows that it is possible to achieve in many ways?

...Thus, Unger knows how to measure PEM. So why is CDC trying to bury PEM? After all, PEM is the most important symptom of the disease--and PEM distinguishes ME patients from people diagnosed with CFS who in reality are just depressed. But maybe that's the point. To lump bona fide ME patients in with the depressed. That way you don't get meaningful data or treatment, and the band plays on...

It is to perpetuate the myth of the "depression" syndrome.

 

[xchocoholic]

There are plenty of medical tests that aren't easy. Why complain about this one ?

 

[Mary]

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

 

[Esther12]

We don't have a consistent validated way of measuring fatigue either.

 

[Nielk]

We don't have a consistent validated way of measuring fatigue either.

So true, Esther. Therefore, fatigue should not be one of the required symptoms for diagnosis.

 

[Gingergrrl]

@mindykitei Thanks for posting this and it is very disturbing. I have not done the 2 day CPET b/c not well enough and fear it would cause my symptoms to worsen. However, the test has been proven scientifically by Pacific Fatigue Lab (now Workwell Foundation) to demonstrate the concept of PEM. Their studies have shown that PEM from this test cannot be faked so if a person with depression or any other fatiguing illness took the test, their scores on day two would look very different than someone with CFS. In fact, these tests are used as a measurement of degree of disability by Social Security. If I know this (and I am not a doctor or scientist) than surely the CDC knows this. How sad.

 

[Seven7]

We need to replicate the study over and over so they cannot refute. This should be our priority.

 

[Gingergrrl]

We need to replicate the study over and over so they cannot refute. This should be our priority.

@inester7 It doesn't even sound like they are refuting them, it sounds like they are IGNORING them!

 

[Seven7]

@inester7 It doesn't even sound like they are refuting them, it sounds like they are IGNORING them!

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

 

[Scarecrow]

I was more than a little perplexed when Beth Unger made that comment. Presumably they'd never drop fatigue as a requirement so why PEM? How easy is it to measure fatigue? Chalder? Wouldn't go there. Fair enough to consider my own relative fatigue over time (ignoring any perceptions due to brainwashing, errrr.... I mean CBT) but how does my fatigue measure up to yours?

From personal experience I can come up with two contributing factors that may account for what Unger said though I still don't fully understand her logic. I'm sorry for the length of this post but you'll need to indulge me so I can illustrate the points.

One
Over the past thirty years, based on a three point scale (mild / moderate / severe) the extent of my ME has veered from mild and gradually getting worse especially cognitively (first six years) to suddenly, following a respiratory infection, physically moderate but with severe cognitive dysfunction (had to leave university and couldn't work) to slowly recovering back to mild (over the next three years) and remaining at that level but fluctuating quite a lot. At times I've only just been able to hang on to full time - but otherwise undemanding - employment by my finger nails. At other times, I've been lucky enough to be able to play a team sport but only as a constantly rotating substitute. So, all in all, pretty lucky if you can use such a term but certainly more fortunate than most with ME.

If I'd never tried to 'exercise my way out' of my illness just after the five year point, conceivably I'd never have triggered the moderate phase and I'd never really have understood PEM and would almost certainly never have reported it as a symptom. I would, however, have reported exercise intolerance. After the respiratory infection all hell broke loose. PEM was an obvious and unmistakable issue. Then, subsequently, during the mildest of my mild phase in the last twenty years or so, PEM has been all but absent (I'm great at pacing) but when things get tough, it returns with a vengeance.

I'm certain I've had the same illness for the past thirty years. I definitely fulfil CCC and ICC but not fully all of the time. I would always fulfil the 1994 CDC case definition. Most of the world and their dog probably fulfils Oxford.

So is PEM 'a requirement for ME'? I'll get back to you on that one.

Two
What is PEM? I'm sure there are various threads discussing that question. I remember one in particular where everyone was describing their PEM and sometimes there was clear common experience and at other times it was obvious that a totally different symptom was being talked about, which I'm sure led to a lot of scratching of heads.

I think that most people would understand PEM as something like this - return or worsening of some or all of the following: (1) sore throat (2) fluey feeling (3) brainfog (4) headache (5) feeling hung-over / poisoned. That sort of thing. It isn't fatigability, i.e. the more immediate effect of overdoing it. Surely it has to be immunological. The suite of symptoms makes no sense otherwise.

I think that I understand what some people were describing when they thought they were describing PEM but weren't and when they also weren't describing plain, simple fatigability. Immediately following exercise or other exertion, some people were describing feeling cold, shivery, weak and with a pounding heart. I get this too and I really need to lie down when it happens. I suspect it's OI related but I don't consider it to be PEM even though it happens following exertion.​

I don't think it's all that clear cut that PEM has to be mandatory, even though I simultaneously believe that it is an absolute hallmark symptom of ME. Contradictory I know.

The problem is that effective pacing will conceal it. I was a natural pacer for years before I decided I'd had enough of my 'psychomatic' illness. Big mistake. It isn't that I went out and exercised like a crazy person - just a few times a week running or cycling for no more than a hour at a time. And it was more than enough to tip the balance. But what if I'd been more accepting of the situation? I could have just got by, puzzled that I didn't seem to be the person I was as a young teenager. Before the respiratory infection - in my late teens and early twenties, did I have ME? Do I still have ME in my mildest phases? Yes, I would say so.

The second point is that not everyone who claims to have PEM actually has it. I believe it's unmistakable but I guess as with many things it's only unmistakable if you've experienced it, hence Unger's statement that "clinicians will tell you that they can recognize it, they can illicit this information from patients". But she loses me when she refers to PEM not being measurable. For one, why is that so significant. Is nausea quantifiable? Is a headache? And, as above, is fatigue. Yet these symptoms along with others contribute to the diagnosis of many illnesses. Furthermore, what is the problem with a clinician using their expertise to make a diagnosis? Is that not part of the skill of being a doctor?

What is Unger actually saying here? We can't measure it, so it won't feature in a diagnosis. It won't feature in a diagnosis so it can't be important. How would that influence a doctor's advice regarding energy expenditure? Be careful not to over do it so you don't exacerbate the you-know-what. Useful.

One thing I would disagree with though is that a CPET is any kind of measure of PEM, although I'd put money on there being a strong association. I think that PEM will become measurable and that it will be related specifically to immunological factors*. But without further medical advances with respect to the cost of testing and a shift in priority I can't see PEM being assayed for a diagnosis. What would be the point? Other than for research purposes, any responsible physician should be aiming to get their patients to avoid PEM, not measure it.

As far as a diagnosis involving CPET is concerned, I completely understand people in their desperation putting themselves through this for an insurance or benefit claim. I also understand them doing it for research. I'd even consider it - very carefully - to assess the extent of recovery. But it would be thoroughly unethical to insist that even a mild patient should endure VO2max testing for a diagnosis. My position on this would change if abnormalities at a lower threshold are identified but I don't think we're there yet.

* p.s. I get PEM after Perrin treatment. (A form of lymphatic massage, where you lie on a table for 30 minutes or so doing nothing more exerting than turning on to your side or your front etc. but where a major part of your immune system gets an extensive work out.)

 

[Nielk]

We need to replicate the study over and over so they cannot refute. This should be our priority.

It seems like the more evidence that comes out to prove PEM actually exists in ME patients, the more the CDC insists that it's nothing.

 

[Scarecrow]

It seems like the more evidence that comes out to prove PEM actually exists in ME patients, the more the CDC insists that it's nothing.

I would caution against assuming that CPET is measuring PEM as such. I've touched on this in the post above. Totally understand if you don't want to read it. It's a bit long.

Maybe we can answer this another way - and it might change what I think rather than what you think. If you exert yourself emotionally or cognitively, do you get PEM? (I do.) Would PEM caused in this way show up in a CPET? Not sure how you would design such an experiment but does anyone have any theoretical explanations one way or another without going too far off topic?

 

[Gingergrrl]

@Scarecrow I read all your posts but do think that PEM absolutely must remain in the definition and diagnosis of CFS or it will become even more watered down until it is unrecognizable.

The CPET tests demonstrate the concept of PEM even if the term is ultimately given another name. I don't however think that PWC's who are too ill should ever try to take the test and then relapse just to prove a point.

What about those who are bed bound? They could have PEM just by rolling over or trying to have a conversation if that is the state of their body and puts them over the anaerobic threshold. There needs to be an alternative way to measure the oxygen and other gasses to demonstrate PEM without such a physically demanding test.

 

[heapsreal]

PEM is an exacerbation of symptoms after increased activity be it physical or mental. I dont think we can say there is specific symptoms as we have alot anyway but its just that they get worse and sometimes there is a delay of 24hrs before the symptoms hit. The 2day CPET test can measure the disability of PEM but i guess they really need to research it further and see what really is causing the increase in symptoms eg is it increased cytokines, is it a reduction in atp, the list goes on??

 

[alex3619]

@Scarecrow What about those who are bed bound? They could have PEM just by rolling over or trying to have a conversation if that is the state of their body and puts them over the anaerobic threshold. There needs to be an alternative way to measure the oxygen and other gasses to demonstrate PEM without such a physically demanding test.

There probably is. Gas analysis can do a lot, even without exercise. Indeed I had that kind of gas testing done back in 1993 for CFS! (It was not being called ME by most doctors back then, or now for that matter.) That was Dr Andriya Martinovic. My metabolic function was consistently low. Indeed, not exercise physiologists but metobolism researchers use this kind of testing. Emphasis on exercise testing is because it shows the day-after crash, and because they are exercise researchers.

I made same point some time ago: that a really sick patient could trigger post exertional issues just surviving. They do not need to exercise. This however would not show an energy crash, it would be a one-off test. Now I have heard from people, anecdotally, that this has been done. What hasn't been done is writing the findings up in any kind of paper so far as I am aware. I hope somebody releases some data sometime.

Its also fair to say that CPET only measures one aspect of PEM. Its not a perfect test, but its what we have now. I hope better tests will come along, but to ignore a good test because a better one might be in the future sometime is not a great idea.

 

[Gingergrrl]

There probably is. Gas analysis can do a lot, even without exercise. Indeed I had that kind of gas testing done back in 1993 for CFS! That was Dr Andriya Martinovic. My metabolic function was consistently low. Indeed, not exercise physiologists but metobolism researchers use this kind of testing. Emphasis on exercise testing is because it shows the day-after crash, and because they are exercise researchers.

@alex3619 Wow, you had that test back in 1993? How did that come about and what was the follow-up? Is that test still available today as a way to demonstrate the level of disability in someone who is not well enough to do the CPET testing? It seemed to me like there must be some kind of metabolism test (outside of having to exercise) but I didn't know how to explain it like you did.

 

[alex3619]

I had that testing at my doctor's clinic. It just requires a machine and a trained staff member. Its metabolic gas analysis, and its not rocket science. In combination with a SPECT scan which showed brain hypometabolism he could show not only low metabolic rate but low brain metabolism too. I do not know how to get this testing done now, even here. It would take research.

Dr Martinovic was getting good success with about 60% of patients, and some success with about 30%, and about 10% did not improve or got worse on his methods. Rule one was stop smoking. He never had a success story of a patient who still smoked.

To be fair though cures were very rare, so rare they may have had nothing to do with his treatment. Many did have substantive remission ... still sick, still having to be careful, but able to lead a mostly normal life. Once upon a time (2007? and prior?) this was all written up on the Wikipedia entry for CFS, then it was all deleted and psychobabble ruled.

His protocol was very complicated, too complicated to be useful for most doctors. He was working on ways to simplify it, and then he came under assault by the HIC, our Health Insurance Commission, as many CFS and ME docs do here. He was forced to stop treating CFS entirely. You see, there is no accepted treatment for CFS, therefore any treatment is fraud. Results do not matter.

 

[Scarecrow]

@Scarecrow I read all your posts but do think that PEM absolutely must remain in the definition and diagnosis of CFS or it will become even more watered down until it is unrecognizable.

I think that we are essentially in agreement @Gingergrrl43 except with respect to the exact relationship between a CPET and PEM.

Like you, I'm adamant that PEM must remain part of the definition - but it should be qualified. There's no doubt in my mind that PEM is a hallmark of ME but due to the right combination of severity (i.e. mild) and behaviour (effective pacing), it may not manifest itself. If that isn't born in mind and people in a similar position to the one I was in are excluded from a diagnosis on the basis that they do not have PEM, then the prospect for them is not a good one. Paradoxically, to deny them a diagnosis of ME because PEM is absent could very well lead to them 'pushing through', causing PEM to happen. And by the time you get PEM, you're in a very bad way.

As I understand it, the CPET studies demonstrate a broken energy system, possibly a reduced ability to recycle ADP back to ATP. I think that I can anecdotally back up my assertion that a 2nd day CPET is unlikely to be measuring PEM - even though PEM may and, in fact, is very likely to occur following a CPET. About 5 years ago, following a period of pushing too hard in all sorts of ways, I gave myself a complete rest from any exercise more strenuous than walking, initially for one year. After a year, I went for a jog over a distance of 5km. I maintained the jog and thought 'great, I'm on the mend'. I repeated the same distance 3 days later and it felt tougher but I still managed to jog the whole way. Another 4 days later, I completed the distance but I walked part of the way. I was weak and shakey. The following day, I was crippled with exhaustion which took some time to recover from (weeks not days). That isn't a 'normal' response.

If those jogs had been under CPET conditions, what story would they have told? I think they would have produced results consistent with 'patient' not 'control'. However, at no point did I have anything resembling PEM, i.e. any kind of malaise. Therefore I don't think that a CPET measures PEM, it's measuring something else before PEM even kicks in. That 'something else' could be leading to PEM eventually, by routes direct or indirect, but it is not synonymous with it.