Is CDC Out to Bury PEM?

[Bob]

I agree with most of what you say, but I disagree with you somewhat on this point. If a patient has PEM, they are part of a subset who is harmed by exercise and likely to get really ticked off if offered CBT as treatment.

PEM is an extremely important symptom in a clinical setting because it tells the doctor how the patient must not be treated.

Additionally, if Unger is really interested in subsets, it's pretty obvious that there should be a PEM (ME) subset. And if you pull the PEM subset out of the CFS diagnosis, is anything substantial left? Or is it just psychological and physiological misdiagnosis that remains?

Failure to have an officially recognized disease defined by PEM, whether under the label of "CFS" or under the label of "ME" is just too harmful to too many patients in too many ways. It's grossly negligent and unacceptable.

It's not acceptable to throw ME patients with PEM into a "CFS" diagnosis where extremely inappropriate, harmful and unhelpful recommendations for treatment exist. Exactly what does that sort of grouping accomplish, aside from pretending a problem has been solved?

I totally agree with you. I suppose I was trying to explore the reasons why the CDC don't yet see PEM as being of primary importance in a clinical setting. If we understand their point of view, then we can better refine our arguments when we present evidence to them and other service providers.

PEM is an extremely important symptom in a clinical setting because it tells the doctor how the patient must not be treated.

As I said in my previous post, the UK NICE guidelines do require PEM for a CFS/ME diagnosis (although I think the wording is ambiguous) and, as everyone knows, CBT & GET are the only treatments recommended by NICE for CFS/ME. So the requirement of PEM in the NICE guidelines has made zero difference for us. If we're extremely 'lucky' in the UK, we might be offered graded activity programs or counselling instead of CBT/GET.

So, our experiences in standard clinical settings are influenced very little by the diagnostic criteria used, and I think this will continue to be the case until we have biomarkers or biomedical treatments.

That's not to say that we shouldn't advocate for change. I'm just pointing out what little difference some changes might make in practical terms in the average general practitioner setting.

The CBT/GET lobby in the UK argue that CBT/GET are appropriate interventions for CFS/ME patients with PEM, because (they claim) the therapies help to remove the boom and bust cycle that CFS/ME patients experience, etc etc. The PACE trial, they claim, is proof of safety.

 

[Bob]

It concerns me those tests as I have my doubts that they know the best cognitive test to do on us. I myself found when I was having cognitive testing for a ME/CFS research study being done in Adelaide Australia (it should be published in the future) that many of the cognitive tests didnt show my severe brain issues at all (which shocked me), while a couple of others certainly did (one did show up my issues very severely). So its a huge deal what test they are using to test this in us.

Yes, I agree. The specific type of cognitive test is crucial. We do have evidence that demonstrates which cognitive tests show abnormalities in ME/CFS patients, as has been discussed on the forum. (We should write to Unger about the details.)

 

[Bob]

I can get PEM from both, though the PEM from mental exertion seems less full-bodied than the PEM from physical exertion. I tend to just end up with a headache and difficulty thinking much after reading a novel, for example, whereas physical exertion will result in full-body pain + the cognitive problems and headache.

That's exactly what I get. My mental exertion seems to be slightly contained, in that it won't provoke a full-bodied relapse, but it only provokes a temporary brain-shut-down. Whereas physical exertion can provoke a total relapse.

HIP raises an interesting discussion re mental exertion vs physical exertion. Also, some of us have more pronounced cognitive symptoms than others, while some of us have mainly physical symptoms. (I've got a good mix of both.)

 

[taniaaust1]

I can get PEM from both, though the PEM from mental exertion seems less full-bodied than the PEM from physical exertion. I tend to just end up with a headache and difficulty thinking much after reading a novel, for example, whereas physical exertion will result in full-body pain + the cognitive problems and headache.

On the subject of the differences of mental exertion symptoms to physical I get those ones too for that, but another symtom I get for mental exertion is blurred vision. (I can also get that for physical but in that case its usually due to getting an attack of POTS). Mental exertion for me also causes memory issues as badly as my POTS does .

 

[MeSci]

A very good candidate for explaining the biochemical mechanism of PEM is the release of the cytokine IL-6.

A huge amount of IL-6 is released from exercise: IL-6 blood levels will increase 100-fold after exercise.† Exercise also causes IL-6 to be released in the brain.† High IL-6 levels are associated with cognitive dysfunction † and cognitive decline.† † IL-6 release can also induce fever (high body temperature), and a few ME/CFS patients experience fever during PEM.

So it might well be that the release of huge amounts of IL-6 from exercise is the cause of physical exertion PEM.

IL-6 is also centrally involved in neuroinflammation.† So if mental exertion somehow ramps up levels of neuroinflammation in ME/CFS patients, more IL-6 may be released in the brain, perhaps leading to mental exertion PEM.

More info on IL-6 and PEM is found in this article: http://phoenixrising.me/archives/5217

I certainly think that the interleukins are involved in PEM.

It has occurred to me that it may be of significance that many people feel that their PEM is like a bad hangover - I certainly do. Hangovers are widely considered to be due to dehydration and electrolyte deficiency. Sound familiar?

I have been looking into how exertion-induced mineral and fluid loss might be prevented in my blogposts here and here.

 

[Mij]

I'm curious if anyone here gets calf soreness/fatigue and gait/equilibrim problems after reading or concentrating too much. I feel like I've climbed a mountain after doing my income taxes.

 

[Firestormm]

I'm curious if anyone here gets calf soreness/fatigue and gait/equilibrim problems after reading or concentrating too much. I feel like I've climbed a mountain after doing my income taxes.

I certainly suffer 'PEM' after trying to work on my disability renewal even pacing myself. It's what I was saying before: PEM is for me at least more than physical exertion and it's aftereffects - it's mental exertion too: having the effect of symptom exacerbation.

I think we would probably chose different words to describe these feelings - though perhaps would broadly agree that the aftereffects are not 'new' symptoms but a 'flaring' of existing symptoms.

Any form of study or extended period of 'thinking' and trying to think then write cogent answers or calculate sums... totally floors me now. Especially frustrating is the lack of being able to express what I have in my head. Not being able to get in out into words or onto paper.

Interesting - for me at least - to hear Komaroff (Video 5 from Stanford), tell of how one of these standard tests they use, gets you to count back from 100, subtracting 7 each time. He said even with one of his patient who was a Professor of Mathematics before his ME, cannot calculate to sums when he moves from e.g. 93 to 86, or 86 to 77 etc. Apparently it's a well known test - not that I was familiar with it (I must check it out): but it exemplifies my issue in part.

I am the same with studying and trying to understand and then interpret or summarise text especially text of an 'academic' or even mildly complex nature. I went to university and before then college as a mature student (I was around 35 years old) with ME. And needed the help of a student 'buddy' (in my case a Phd student), to help get my thoughts from head to paper cogently.

But the effect of 'writing' an essay would floor me the next day... in much the same way as walking too far or overexerting physically does. It's manageable - though you need to reduce what you try and do - but it means everything is much slower to complete and completing something as well or as accurately as once was possible: sometimes/most of the time is impossible without much help and support.

So for me: this is the worst part of ME.

Sorry. I ramble

 

[Mij]

@Firestorm How about putting us on the bike on day two counting backwards? I would fall off.

I can't walk and talk on a cell phone when I'm out so I no longer use one. I get woozy.

 

[anciendaze]

There is another angle which might be susceptible to laboratory tests. This ties in with Jason's recent results about very low levels of BDNF in ME/CFS patients. Levels of BDNF are strongly affected by exercise. This also ties in with cognitive function.

While wholesale prescription of exercise as "good for what ails you" is always a concern, there is an opening here for biochemical tests which would not require expensive MRS equipment only available at special medical centers. If, as we seem to experience, BDNF drops in response to what others consider a modest exercise challenge this would constitute a clear marker distinguishing ME/CFS patients from those who benefit from exercise. It would have the advantage of being correlated with parallel research on fatigue and cognitive function in MS patients.

No politician or bureaucrat in their right mind is going to attack millions of MS patients as malingerers when thousands of excess deaths are now attributed to that disease. Nor or they likely to dismiss effects of BDNF in those recovering from traumatic brain injuries as mere placebo effect.

Added: there is even a possible biochemical intervention associated with BDNF.

 

[MeSci]

Interesting - for me at least - to hear Komaroff (Video 5 from Stanford), tell of how one of these standard tests they use, gets you to count back from 100, subtracting 7 each time. He said even with one of his patient who was a Professor of Mathematics before his ME, cannot calculate to sums when he moves from e.g. 93 to 86, or 86 to 77 etc.

or even 86 to 79

QED?

 

[anciendaze]

I...Interesting - for me at least - to hear Komaroff (Video 5 from Stanford), tell of how one of these standard tests they use, gets you to count back from 100, subtracting 7 each time. He said even with one of his patient who was a Professor of Mathematics before his ME, cannot calculate to sums when he moves from e.g. 93 to 86, or 86 to 77 etc. Apparently it's a well known test - not that I was familiar with it (I must check it out): but it exemplifies my issue in part...

This is indeed a standard test for dyscalculia. You can find it in "Osler's Web". I can handle it by subtract 10, add 3, but this is a deliberate work-around for malfunctioning mental equipment.

After my worst episode, (a long period which I'd rather not discuss,) I literally had to relearn arithmetic. This is characterized by a problem which appeared in an episode of "The Big Bang Theory" in which Sheldon worries that Amy has damaged her brain by a girls' night out in which she overindulged: "Quick, what's 13 times 23?" When a friend told me this a few months ago, I missed the point: "Isn't it 299?" This could have been done as 230+69, but I checked that answer as (18-5)*(18+5)=18^2 - 5^2 = 324 - 25. Memorizing squares shifts the load on short-term memory to long-term memory. I find I now have to avoid long chains of quantitative reasoning.

I didn't do arithmetic this way before I was ill. It turns out this method is also used by people who do mental arithmetic on stage.

Did I mention that I had two degrees in mathematical subjects before that episode? How about running an Army artillery fire direction center using manual computing methods? Running software research for a startup computer company? If that doesn't prove that dyscalculia is a new problem what would it take to convince you?

 

[Bob]

or even 86 to 79

lol, @Firestormm, you totally failed the test!

(Hope you don't mind me laughing - I'm only laughing in a friendly supportive way.)

 

[Anne]

This is very well put:
"Just because it is not easy to objectively test for a specific symptom doesn't mean itt should not be required for a diagnosis of the disease."

PEM is the hallmark of CFS (...) It is beyond ironic that Dr. Unger wants to dismiss PEM as an element of diagnosis - she wants to make diagnosis simpler - diagnosis of what exactly? Without PEM, you have a zillion conditions which cause fatigue etc., none of which are CFS.

As many of you have already mentioned, it's very odd that Unger seems to mean that "a consistent, validated way of measuring it that clinicians can use easily" is necessary for a symptom to be included in a case definition. With that line of reasoning symptoms such as fatigue, pain, sore throat, headaches would also be unfit as part of the criteria.

This sounds illogical. Only diseases with measurable symptoms can be defined? Only symptoms that are easily measurable with current medical technology can be part of a case definition?

Also, I find it quite remarkable that Unger is claiming there is no validated way to measure PEM, when she herself has it in her power to validate the research on the 2-day CPET tests (Stevens Protocol) by Snell/Van Ness/Stevens and Keller by including the Stevens Protocol in the CDC multisite study (as the patient community requested).

I am not one for conspiracy theories, I would want to believe that the failure of the public authorities in all countries to deal successfully with ME/CFS is due to ignorance rather than malicious intent - and therefore can change - but when the news of HHS, CDC and NIH taking the wrong turns keep coming so regularly, it's hard to stay hopeful.

/Anne Örtegren

 

[Seven7]

As many of you have already mentioned, it's very odd that Unger seems to mean that "a consistent, validated way of measuring it that clinicians can use easily" is necessary for a symptom to be included in a case definition. With that line of reasoning symptoms such as fatigue, pain, sore throat, headaches would also be unfit as part of the criteria.

This sounds illogical. Only diseases with measurable symptoms can be defined? Only symptoms that are easily measurable with current medical technology can be part of a case definition?

Also, I find it quite remarkable that Unger is claiming there is no validated way to measure PEM, when she herself has it in her power to validate the research on the 2-day CPET tests (Stevens Protocol) by Snell/Van Ness/Stevens and Keller by including the Stevens Protocol in the CDC multisite study (as the patient community requested).

I am not one for conspiracy theories, I would want to believe that the failure of the public authorities in all countries to deal sucessfully with ME/CFS is due to ignorance rather than malicious intent - and therefore can change - but when the news of HHS, CDC and NIH taking the wrong turns keep coming so regularly, it's hard to stay hopeful.

/Anne Örtegren

Best reasoning so far, can you pls pretty pls sign in and present this argument in the next CAcfs meeting

 

[Mary]

Well, I wrote an e-mail to Dr. Unger and got a reply today! Am very surprised. I just now replied to her reply. It's a bit lengthy, but here's our correspondence. It starts with my reply today to her e-mail, so you need to scroll down to see the first e-mail and her reply:

Dear Dr. Unger:


Thank you so much for your reply but I am still concerned by what you are saying. You agree that PEM is a “characteristic feature of CFS that should be retained as part of the case definition”, but believe it should not be required as an element of diagnosis because of difficulty testing for it.


There is a systematic way to measure PEM - the 2-day exercise stress test - but as you note it is expensive and could be physically impossible for many CFS patients to do. But that does not obviate the need to require PEM as an element of diagnosis.


So how do you diagnose PEM without the somewhat difficult and expensive 2-day exercise stress test? Self-reporting, until simpler testing is available. Doctors routinely diagnose fibromyalgia through self-reporting. There is no simple diagnostic test for FM. But that doesn’t stop doctors from diagnosing FM with its characteristic trigger points. The elements which comprise FM are not dismissed because there is no systematic way of measuring them. Actually in this respect CFS has a much better chance of being properly diagnosed because there is a systematic (though somewhat impracticable) way of measuring it, unlike the self-reported pain of FM.


As you acknowledge, there are dozens of illnesses which have pain, fatigue, sleep difficulties and so on, which are not chronic fatigue syndrome, and these illnesses are excluded when a CFS diagnosis is made. (Although many conditions co-exist with CFS - e.g., I’m hypothyroid which is being treated with appropriate medication, but I still have PEM.) I think you’re basically saying that CFS is simply a diagnosis of exclusion and has no hallmark of its own, even though PEM is part of its definition. I’m having difficulty with this reasoning.



My huge concern is that if you don’t require PEM as an element of diagnosis, as I stated before, you will have patients diagnosed with CFS who don’t have PEM - and thus don’t have CFS. It makes no sense. Corresponding studies about CFS will be using cohorts of patients who don’t have PEM and thus who don’t actually have CFS, thus ensuring that the riddle of PEM and CFS is never solved. Requiring PEM as an element of diagnosis is the only way CFS patients will ever have any hope of proper research being done. I really don’t understand how you propose to diagnose CFS without its hallmark symptom of PEM.


You state that PEM has not been widely investigated in other illnesses. I think the reason for this is that it doesn’t exist in other illnesses. Again, the researchers who developed the 2-day exercise stress test found results not seen in any other illness. The results were devastating. I think if PEM existed in other illnesses, we would have heard about it by now because it is so devastating. It stops lives in their tracks. You can’t live much of a life on 3 to 4 hours of light activity a day - and I’m one of the lucky ones.


I believe health care providers need to be educated about PEM so that they can be comfortable with how they diagnose and manage CFS patients. Again, if a patient doesn’t have PEM, he or she doesn’t have CFS. So I don’t want a doctor comfortably diagnosing CFS without PEM. It makes no sense at all. Doctors desperately need to be educated about the 2-day exercise stress test and the devastating reality of PEM that it demonstrates. Most doctors don’t even believe CFS is real, much less know anything about PEM. If doctors were educated about the reality of what exercise does to CFS patients (PEM), then patients would stand a much better chance of getting proper treatment without further harm being done to them through such things as graded exercise. And would stand a much greater chance of being taken seriously. Right now we’re not.


And if CFS patients are lucky, if PEM is taken seriously, perhaps proper research may be done, enough money may be allocated to research, so that we may finally understand the causes of PEM and thus CFS, and perhaps find a cure.


Mary Barker

From: Unger, Elizabeth (CDC/OID/NCEZID) [mailto:eru0@cdc.gov] Sent: Thursday, July 24, 2014 9:27 AMTo: Mary BarkerSubject: RE: Chronic Fatigue Syndrome and Post-Exertional Malaise


Dear Ms. Barker,


Thank you for your message. It is important to differentiate CFS from the variety of conditions that may cause similar symptoms. All CFS case definitions require that these conditions are excluded on the basis of appropriate clinical evaluation and laboratory screening tests. Only after these conditions are eliminated or appropriately managed should the diagnosis of CFS be considered.


I agree that PEM is a characteristic feature of CFS that should be retained as part of the case definition. Difficulties in measuring or determining the presence of PEM do not detract from its importance. I will try to clarify the comments I made at the recent CFSAC meeting.


Clinicians need to recognize the importance of asking their patients about their responses to physical and cognitive stress, i.e. eliciting a history of PEM, because of the impact of PEM on disease management. When patients and their families and friends understand the importance of activity management, they can work together to minimize or avoid PEM. Emphasizing PEM in this way, to improve care of CFS patients, can be done without making PEM a requirement for diagnosing CFS.


The concern I raised was about requiring PEM before a diagnosis could be made. Lack of a systematic way to evaluate PEM may introduce additional barriers to recognition of CFS and delivery of appropriate health care. As PEM has not been widely investigated in other illnesses, it is difficult to be certain that this feature is unique to CFS. As you note, the 2-day exercise test, which has shown promise in research settings, would be difficult to apply in routine clinical practice. Requiring all potential CFS patients to undergo such an expensive and difficult task would not be in the best interest of assuring compassionate and high-quality care from the medical community at large. CDC places improved care for CFS patients as one of its top goals. We want to empower health care providers to feel comfortable with how they diagnose and manage CFS patients.


I am truly sorry to learn of how this illness has affected you for so many years. We hope to continue to work with the CFS community to develop solutions that will benefit all.


Sincerely,


Beth Unger

From: Mary Barker
Sent: Tuesday, July 15, 2014 12:54 PMTo: Unger, Elizabeth (CDC/OID/NCEZID)Subject: Chronic Fatigue Syndrome and Post-Exertional Malaise


Elizabeth Unger, PhD, MD, Chief of the Chronic Viral Diseases Branch

Centers for Disease Control and Prevention (CDC)

1600 Clifton Road

Atlanta, GA 30333

Email: eunger@cdc.gov



Dear Dr. Unger :


I was extremely dismayed to read that you want to omit post-exertional malaise (PEM) as an absolute criteria for diagnosis of chronic fatigue syndrome (CFS) because, according to you, PEM is too difficult to measure and quantify. You stated at the CFSAC conference that requiring PEM as an element of diagnosis would be a “big barrier” - big barrier to what? Proper diagnosis? PEM IS the hallmark of CFS. It is the one characteristic of CFS which distinguishes it from any other illness.


Without PEM, you don’t have CFS. This is why a proper definition and diagnostic criteria which includes PEM is essential. Otherwise you are going to be looking at all sorts of tired people: people with thyroid issues, people who eat crap, people who are tired because they take statins, people who don’t get enough sleep, people with celiac disease, people who are anemic, people deficient in B12 and folate, the list is endless. And all of these people can be helped with proper diagnosis and none of that will help someone with CFS.


There is a consistent, validated, quantifiable method of measuring PEM developed by the Fatigue Lab at the University of the Pacific in Stockton, using a 2-day exercise stress test protocol. Performance is measured on the first day by one exercise stress test, and then re-tested on the second day with a second exercise stress test, POST-EXERTION. And the results are devastating on the second day. There are CFS patients on the verge of heart failure on the second day of testing. Oxygen utilization drops by some 20%, UNHEARD OF IN ANY OTHER ILLNESS. This is PEM, and PEM is what makes CFS, CFS.



Granted, the 2-day exercise stress test is expensive and for many with CFS too difficult to go through - we’re too weak to endure the testing! But that does not in any way provide a rationale for discounting the existence of PEM - just the opposite. CFS is more debilitating than almost any other illness, because of PEM.


So to drop any mention of PEM because it takes a bit of work to measure borders on the absurd. There’s no simple blood test (at present!) which can reveal the existence of CFS (it seems like this must be your concern), but perhaps this is because adequate research money has not been spent on CFS and PEM. There was no simple blood test for years for AIDS, but that didn’t stop researchers from looking for one. What you appear to be saying in effect is, we don’t understand what’s going on here with PEM, it’s going to take some work to find out, and, therefore, we’re not going to try to understand it and will just act as if it doesn’t exist.



For what it’s worth, I have been suffering from CFS since 1998, when I first crashed (PEM), and have been crashing ever since. PEM has pretty much destroyed my life. My activity is limited to 3 to 4 hours of light activity a day in order to avoid a crash (complete and utter exhaustion, indescribable to anyone who has not experienced it, which takes days of complete immobility to recover from). Before 1998, I was extremely active - I worked full-time and was physically very active - walked a lot, rode my bike, hiked, etc. etc. etc. I have lost all of that. On a good day I can make it to the grocery store and the post office, and that’s it, for the entire day. Many other days I can’t even manage that.


Something to consider: if someone is depressed, they may not FEEL like exercising, but they have the physical ability to do so, and, as a matter of fact, their mood will improve if they do exercise. Someone with CFS, however, may want to exercise so badly it hurts but are unable to do so because the consequences are so devastating. Swimming is my favorite thing in the world but if I go in the pool, I have to just float - if I dare swim about I’m in bed the next couple of days. I measure each day’s energy very carefully, spend it very carefully, and my days usually end around 1:00 p.m.


I am asking you to re-think your position on this issue which has no basis of support and will cause incalculable harm to millions of people already sidelined for decades by the medical community which, in the main, has either denied this illness exists or trivializes it, and hasn’t bothered to listen to why the word “POST” in “post-exertion” is so important. You want a simple diagnostic tool for CFS? Then spend the money on research on the actual illness, puzzling as it may be, not an imaginary simpler illness.



For more information, see:


http://solvecfs.org/pfl-testing-for-post-exertional-malaise-and-disability/

http://solvecfs.org/the-hallmark-of-cfs/

http://informahealthcare.com/doi/abs/10.1300/J092v14n02_07



Sincerely,




Mary Barker

 

[Gingergrrl]

@Mary Your letter is excellent and thank you so much for taking the time and energy to write it. When someone does something like this, it is on all of our behalf, and I am very grateful to be part of this community. I am glad that Dr. Unger took the time to answer you although I was not satisfied with her response. Hopefully letters like this will get her thinking more about the issue of what PEM is like for individual PWC's? Good job

 

[Mary]

Thanks Ginger - if anyone wants to reply to Dr. Unger's reply to me, feel free. I know there are angles I may have missed or things could be put differently, etc. And also, the more she hears from, the better!

 

[medfeb]

@Mary,

Great letter and bravo to you for getting a response. Thank you for sharing!

Based on other exchanges, Dr. Unger's concern with making PEM a mandatory symptom goes beyond the issue of how it gets tested. In the May 2013 CFSAC, she rhetorically asked “If a patient doesn’t have [post-exertional malaise], would you not manage them as a CFS patient?" And CDC submitted a comment to IOM that stated that CCC and ME-ICC definitions were both limited because they required PEM/PENE and that doing so would eliminate those patients who did not have PEM/PENE. CDC's position is that "CFS" should encompass both PEM and no-PEM patients.

About the cost of testing and practicality of CPET - I'd think a combination of screening tests and patient reported tools like the DePaul Symptom Questionnaire could be used as a quick first pass to identify those who should have more extensive testing like CPET to confirm ME.
Regarding CPET being a research test - its true that using CPET in the 2-day format has only been used clinically by ME experts and in research. But as a test, CPET is the gold standard for evaluating functional capacity, is accepted by a number of mainstream U.S. medical societies and is used clinically. And the 2-day CPET format is accepted by the U.S. Social Security Administration for proof of disability. So its hard to imagine there would be huge barriers to having it be used for ME.

 

[Bob]

Some of the patients who Beth Unger has investigated do not have PEM. I forget the percentage, but I think she said that roughly 87% of a cohort that she has investigated had PEM. (I'm not certain what patients she was referring to - perhaps she was referring to those from the expert clinics in her multi-site trial - but it might have been another cohort.) She has a duty to serve those patients without PEM, as well as those with PEM, whatever we think about it.

Just as a point of discussion, perhaps it might be helpful for our community to subtly change our approach to our advocacy, in order to achieve the best outcome with the CDC in the short term. At the moment, many of us tend to say that ME has PEM, end of story. But that's not the end of the story for Beth Unger, because some of her patient cohort does not have PEM.

So perhaps we need to encourage her to subgroup CFS patients, into those with and without PEM, rather than simply disregarding those without PEM? Her response, in the letter above, suggests that's the direction she's travelling, and if that's what she's doing anyway, then perhaps we should encourage her, as a step in the right direction? It would be a step forwards if PEM was recognised by the CDC to be a factor in a large subset of CFS patients (we might describe these patients as having ME rather than CFS, but Beth Unger might prefer to describe them as being a subset of CFS patients.)

If we could reach a compromise like that, then the next step would be to get the PEM patients treated and investigated as a separate cohort. One step at a time. It would be a massive step in the right direction to have PEM recognised as a prerequisite for a subset of CFS patients. Perhaps we could think about encouraging the CDC to use labelling such as "CFS typical" (for patients with PEM") and "CFS atypical" (for patients without PEM), until the CDC is ready to use the separate labels of 'CFS' (for patients without PEM), and 'ME' (for patients with PEM).

Just some thoughts. What do you all think?

 

[Snowdrop]

I do think we should consider ME from the point of view of 'the other'.
It is understandably hard for us when we are constantly battling others disbelief.

I have noticed of late that PR is becoming very popular attracting people who are looking for health answers from a community that they see as very knowledgable. I have no problem with this (no real help to offer either though) but it would be good in my opinion if this could be an opportunity to expose new people to the real issues around our illness (the one with PEM) while we honour the fact that they have illnesses that are being dismissed and are in need of help and answers.

Sorry if this gets off topic