Is CDC Out to Bury PEM?

[daisybell]

@Bob
I like your suggestion very much. Sub-grouping those with PEM could go hand in hand with advice to avoid GET..... just dreaming here!!

 

[Mary]

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?

I don't know the answer. My instinct (or maybe I'm just going on my experience) is that PEM is the defining characteristic of CFS, and therefore people without PEM don't have CFS. They have something else wrong with them which is just as deserving of attention and research as CFS. Requiring PEM as an element of CFS diagnosis doesn't have to mean that people without PEM are dismissed or ignored.

I think this whole issue boils down to one of definition. How is CFS defined - if PEM is part of the definition, then people without PEM don't have CFS. But if PEM is just a possibility and not a requirement, then of course you don't have to have PEM to have CFS. Since PEM does not appear to be present in any other illness, it seems to me that it is a defining characteristic of a specific illness, which has the horribly vague name of CFS. If CFS had never been called CFS - such a nebulous name - maybe we wouldn't be lumping together various illnesses which perhaps shouldn't be lumped together.

Or you can consider PEM as defining a subset of patients with CFS.

I don't know the answer. I know my preference but it may not be accurate. We just don't know enough, but I am very afraid of eliminating PEM as an element of diagnosis. I know there have been attempts to say we are depressed, etc. - to deny the horrible reality of CFS, and I'm afraid that's where Beth Unger's reasoning is heading.

Mary

 

[Gingergrrl]

@Mary I don't know if you saw this when I posted it in a few other threads (sorry to those for whom this is repetition!) but I saw a real ME/CSW specialist two weeks ago who said that he HATES the name CFS and personally calls it "Viral re-activation disease caused by immune impairment." I loved that name and thought it was perfect and since my appt when I've used that explanation with people-- that I've had a chronic re-activation of the virus(es) that caused me severe mono two yrs ago and my immune system is too impaired to fight it so it is impacting my entire body (cardiac, autonomic, GI, etc,) people respond entirely differently than if I say I have "Chronic Fatigue Syndrome."

I know this thread is not about changing the name of the disease and CFS is all we have to work with. But I think if PEM is taken out, then we have nothing to work with. All of the real ME/CFS specialists in the US recognize PEM as one of the hallmark symptoms. If Beth Unger wants to make PEM and non-PEM subgroups than really IMO what she is doing is dividing up the people into groups who actually have ME/CFS and those who do not have ME/CFS. If that is the case, than both groups should be treated, but the treatment for those with PEM should be very different than the treatment for those who do not.

 

[Mary]

Hi Ginger - no, I didn't see your earlier posts, I haven't been on this board much. But what you say makes so much sense to me - thanks for re-posting the information!

 

[MeSci]

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?

Agree with everything you say, @Bob, but would add the need to recognise that people can move from "CFS typical" to "CFS atypical" and vice versa.

 

[Bob]

Agree with everything you say, @Bob, but would add the need to recognise that people can move from "CFS typical" to "CFS atypical" and vice versa.

Yes, I think that's one of the subtleties and difficulties that some of us (me included) often forget to acknowledge...
Whereas some ME/CFS patients have very pronounced PEM, some patients struggle to identify PEM, and some aren't certain if they have it or not. Some think they have a subtle form of PEM, or borderline PEM, and some can go through periods of remission where they don't experience obvious PEM. Other patients do identify with PEM, but it took them years to realise that was what was going on because it was a subtle or complex process. So, I do actually agree with Beth Unger that there are difficulties in a clinical setting in identifying PEM. (However, my personal opinion is that PEM must be included in any definition of 'ME', and it is essential that it is recognised as a fundamental feature of ME.)

 

[Valentijn]

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?

I'd be fine with non-PEM types keeping the CFS label. I'd rather have "ME" or pretty much anything other than "CFS" anyhow But that means that patients with PEM probably do need a separate label, as they have a rather different and distinct disease process occurring.

At the very very least, all results in research studies should break down results based on whether the patients have PEM or don't have PEM. Results for these groups should never be mixed, unless the separate results are also clearly presented. And conclusions should not be reached about a combined group if it contradicts or disregards the data regarding the subgroups.

So yes, I think it's okay to subgroup, as long as it's done properly. But I still think it's pretty stupid and messy to do so, since it's guaranteed to create more work and expense for everyone involved, with no conceivable benefit except to retain a label for the CFS patients who lack PEM.

 

[Bob]

At the very very least, all results in research studies should break down results based on whether the patients have PEM or don't have PEM. Results for these groups should never be mixed, unless the separate results are also clearly presented. And conclusions should not be reached about a combined group if it contradicts or disregards the data regarding the subgroups.

Yes, absolutely, but we're talking about clinical settings here, aren't we? (i.e. in relation to Beth Unger.)

So yes, I think it's okay to subgroup, as long as it's done properly. But I still think it's pretty stupid and messy to do so, since it's guaranteed to create more work and expense for everyone involved, with no conceivable benefit except to retain a label for the CFS patients who lack PEM.

Yep, it's not ideal, but if Beth Unger understands the language of 'CFS', and is willing to consider sub-grouping, or if there is potential for persuading her that it is essential to subgroup patients with PEM, so that they receive the best clinical care, then that's better than what we have now, and a step in the right direction.

I think perhaps framing our arguments in terms/language that the CDC can relate to has the potential get us to our ultimate goal quicker (albeit in steps) than advocating in terms/language that the CDC can't or won't engage with.

So, if we were to push for the importance of a PEM subset, in order to best serve patients in a clinical setting, then perhaps the CDC would be more amenable to this than us declaring that 'ME' is a single illness characterised by PEM. I'm pretty certain that Beth Unger currently views 'ME/CFS' as heterogeneous, and that she is trying to characterise subsets in her multi-clinic study.

 

[Keela Too]

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?

The idea of separating is good.... however I think if ME patients eventually want a name other than CFS, then the last thing we want to do is to have the PEM patients called "typical" of CFS.

Better to leave the CFS name with the patients without PEM. Maybe "CFS standard"?

Then perhaps PEM patients need a different sub-set name ...... ?? "CFS extreme" perhaps?

 

[Nielk]

Oy experts have spoken and signed a letter stating that they have adopted the CCC.

The CCC demands PEM as a mandatory symptom for the disease called ME/CFS.

That is fact.

They do not say that there is a disease with PEM and another without.

We will never define a disease if our aim is simply to include everyone who thinks they have this disease.

What about if some who think they have it, actually have no neurological symptoms at all? Should we include them too?

We will be left with millions of people who suffer from miriads of symptoms that could describe basically anything.

 

[Bob]

We will never define a disease if our aim is simply to include everyone who thinks they have this disease.

I think everyone has been suggesting the opposite of that. i.e. that patients with PEM should be researched and cared for separately to patients without PEM.

My point is that, despite 30 or 40 years of advocacy from patients, the CDC still wants 'CFS' to include patients without PEM. Beth Unger currently has a duty to serve 'CFS' patients without PEM.

So, my point is that if she is deaf to the idea that ME (with PEM) is a distinct disease, as she appears to be, then perhaps we could try to encourage her to at least subgroup patients with PEM as a first step in the right direction. That doesn't change anything in terms of our long-term aims.

 

[Firestormm]

"Over 80% of patients with Fukuda have PEM" (paraphrase - she didn't say 'Fukuda' but that's the definition that was being spoken about). Beth Unger @Stanford see video 1.

I hope to be tweeting about this video - which I enjoyed actually - later today if possible.

 

[taniaaust1]

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.

Interesting counting back test. I just tried it with counting back in 3s as there is no way I'd be able to do it in 7s!. Counting back in 3s, I got as far as 91 and then couldnt work it out with the change into the 80s. My brain is worst then I thought as I thought I'd be able to do 3s.

 

[taniaaust1]

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?

Sorry I dont like it. You said earlier that in the UK for a CFS diagnoses one has to have PEM. So obviously it doesnt help to have it there without actual tests showing it etc or something more then just that.

I also hate the idea of lumping ME and CFS people into the same group even if one is going to subgroup. In research they will probably keep on them researching ME with CFS people lumped together.

Beth too wants to have things simplifed for doctors etc.. having two subgroups with very different treatments (some the opposite) probably wont be seen as simplying CFS, its makes it all more for doctors to have to get their heads around.
........

I personally do not think this illness can be "simplifed" so that GPs are doing well with it, I think ME is an illness we all need specialist doctors in it for. That is where Beth goes wrong, thinking GPs can deal with ME cases!! They cant esp with those who have severe ME. (Im speaking as one who's been throu over 30 different doctors). We need to be saying ME is a specialist field and cant be simplified, we want suitable trained specialists who can also deal and help treat severe ME people.

What other very complex illnesses normal doctors are supposed to deal with? People go to specialists and have specialist testing for such illnesses, ones local doctor isnt expected to be dealing with it.

 

[taniaaust1]

[

I think everyone has been suggesting the opposite of that. i.e. that patients with PEM should be researched and cared for separately to patients without PEM.

My point is that, despite 30 or 40 years of advocacy from patients, the CDC still wants 'CFS' to include patients without PEM. Beth Unger currently has a duty to serve 'CFS' patients without PEM.

I know we have been pushing an awefully long time to be heard but we do now have something which we never had before, that is consensus with many of our ME specialists to adopt the CCC. This shouldnt be forgotten and should be kept being pushed towards. Please dont sweep the fact that happened under the carpet, that is and was a huge progress forward and we need to keep bringing that to attention.

That doesn't change anything in terms of our long-term aims.

I personally think it would. As any kind of change is huge work (and financial costs involved) for our health systems and once they've made huge changes in something, it makes it far less likely they will be doing another for a while. (It may end up being a case of "we changed things to what people wanted and we wont be taking another look at this for 15 years).

If thou we continue to strongly protest, now more then ever before, they may end up having to admit they made a huge mistake. Our specialists stuck their heads out and strongly supported us and ME saying it needs to be separated, I feel like we should keep supporting them and ourselves. To back down now, is to let them down. We may never get that same support again for a very long time esp if we now start saying "we will accept a CFS label".

 

[Bob]

@taniaaust1, all very good points, that I find hard to disagree with. But our message is falling on deaf ears and perhaps government decision-makers might be more receptive to our advocacy if we were to use language that they can easily relate to.

I reckon that Unger is not receptive to the CCC because it doesn't allow her to serve 'ME/CFS' patients without PEM. Unger will always have to consider what happens to CFS patients without PEM. I think we might be able to encourage her to move in the right direction by using language that she is amenable to. Unfortunately this is playing politics, but sometimes politics is a fact of life even in health care.

We've been asking for a distinct illness called 'ME' to be recognised for 30 years or so and it's had no more effect than collectively banging our heads on a wall, for 30 years. Most health care providers look at us as if we are deluded if we talk about ME being distinct from CFS. And most health agencies and government don't have any insight into the difference between chronic fatigue and ME. So our advocacy hasn't exactly been successful. Do we continue for another 30 years with the same strategy, advocating for something that no one understands and that no health agencies can buy into? Or do we start to talk in terms that they can understand and that they can work towards incrementally?

I know we have been pushing an awefully long time to be heard but we do now have something which we never had before, that is consensus with many of our ME specialists to adopt the CCC. This shouldnt be forgotten and should be kept being pushed towards.

I also hate the idea of lumping ME and CFS people into the same group...

I support the use of the CCC but it diagnoses ME/CFS, and not ME.
So where does that leave us in terms of separating ME from CFS, and not accepting a 'CFS' label?
It seems like a mixed message.

I also hate the idea of lumping ME and CFS people into the same group...

So do I, but it's been happening for 30 years and our advocacy has had zero effect because they still use Fukuda, and P2P has even dropped the question asking them to investigate the differences between ME and CFS.

We need to be saying ME is a specialist field and cant be simplified, we want suitable trained specialists who can also deal and help treat severe ME people.

That would be nice. CFSAC recently discussed their recommendation of rolling out a national program of clinical centres of excellence, and they commented on how their recommendation has been persistently ignored.

 

[Scarecrow]

I don't know the answer. My instinct (or maybe I'm just going on my experience) is that PEM is the defining characteristic of CFS, and therefore people without PEM don't have CFS. They have something else wrong with them which is just as deserving of attention and research as CFS. Requiring PEM as an element of CFS diagnosis doesn't have to mean that people without PEM are dismissed or ignored.

@Mary, part of the problem here is the term CFS. It's contaminated by Oxford, the European psych researchers and by Reeves. Putting that problem aside, I think that your use of parentheses is crucial.

If, throughout the entire course of your illness, you've had PEM, then the statement "My instinct is that PEM is the defining characteristic of CFS, and therefore people without PEM don't have CFS" is going to ring true and it might be very difficult to consider anything other than distinct 'PEM / no PEM' illnesses.

Yet you'll find people on this forum who will tell you that they now have PEM but didn't initially (or perhaps don't any longer). Presumably these are the people with some kind of gradual onset, some of whom just kept getting worse and worse and others who had the 'final straw' infection.

CFS is such a muddied term that I don't find it at all useful to define. But my instinct is that PEM is a defining characteristic of CCC ME/CFS, and of course it is already mandatory for ICC ME, but I also know that I haven't had two different illnesses - one with PEM and one without. So, I'm wary of making PEM mandatory for a diagnosis. If this is done, we may be abandoning the gradual on-setters to treatments that will make them worse because it will further weaken their position.

For research, I'm totally clear about my position: no patients without PEM. That's what we need to push: a more closely defined group for research. I believe that that will tell us more about the actual illness (with PEM), the atypical form (no PEM currently) and everyone else (no PEM ever).

 

[MeSci]

Interesting counting back test. I just tried it with counting back in 3s as there is no way I'd be able to do it in 7s!. Counting back in 3s, I got as far as 91 and then couldnt work it out with the change into the 80s. My brain is worst then I thought as I thought I'd be able to do 3s.

I think it will vary according to people's innate mathematical ability, education, learned techniques, practice, etc., but I suppose the issue is finding people's baselines and seeing how exertion affects those?

BTW I just did it.

(But sometimes I can't even add up )

 

[Bob]

...my instinct is that PEM is a defining characteristic of CCC ME/CFS, and of course it is already mandatory for ICC ME, but I also know that I haven't had two different illnesses - one with PEM and one without. So, I'm wary of making PEM mandatory for a diagnosis. If this is done, we may be abandoning the gradual on-setters to treatments that will make them worse because it will further weaken their position.

I think that's a very good point that many of us find it easy to forget about or to ignore.
I have a friend with gradual onset ME (or perhaps it was sudden but ill-defined onset) who now has an illness that looks very similar to my illness (I had sudden-onset.) Because of the nature of the onset, it took my friend years to get to the point where he could define his symptoms and get a diagnosis.

 

[Firestormm]

Not sure people are getting it. If Fukuda (let alone e.g. NICE Guidelines) are capturing 80% + people with PEM why is there a need to change criteria? That is what must be argued and proved for CDC et al. to move on.

And this isn't about 'Beth Unger' says. It's about the research findings she and the multi-site are discovering. So I think it should be less about 'CDC is covering up' and more about a need to better understand the epidemiology.

Even if you guys think that Snell et al and their testing techniques are valid - the HUGE majority of people reporting PEM self-report or are diagnosed by self-report and clinical assessment - including me.

So what you gonna do? Go back and test everybody with your machine (assuming those tests are ever validated and introduced in clinic as a means of diagnosis)?

If Fukuda is capturing 80%+ of people, then making PEM mandatory, will do what exactly? And how do you measure PEM when it too can fluctuate: does absence of PEM in a follow-up test mean I no longer have ME until I next experience PEM?

And what of mental exertion induced PEM? Nobody has yet to my knowledge answered that major issue.

I remain unconvinced that PEM - physical - is unique to and defining of ME. And I am rather sick to death of hearing debate surrounding 'Pure ME' or even 'Genuine ME (as per Colby's latest paper)'.

Not doing ourselves any favours whatsoever.