What is ME ?

[EYAKLLE]

The manifestation and description of PEM differs from patient to patient in each of the 10% disease scale
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%

 

[weyland]

I don't understand what that means, but your assertion is that any old GP can diagnose ME easily by recognizing these vastly different manifestations and descriptions of PEM?

 

[EYAKLLE]

PEM is simple to grasp at each level yes.
Because ME is not some common symptom. Rather it is a rare disease. GP's can recognize it for sure. Many just turn a blind eye to their own recognition. They should get the diagnosis validated by specialist doctors.

The researchers are to blame for not reducing the focus to ME. And for not being able to find the reason for the PEM which specialist doctors can confirm.

Sometimes more research (pots,endocrine,regular viral,immune) only adds to the corpus of misunderstanding,of enlargement with inclusion of patients with anomalies of other persisting states.The human body has many parameters n measures. PEM is rare. PEM is the result of something very nasty and unregular.

The real ME patient of the future will be under the care of HIV Aids doctors. The medical student of the future will see ME patients at the HIV Aids clinic. ME will be on the HIV Aids spectrum. From there it will break into and form its own rightful entity and testing and care structure. Away from the chilly pepper research. Away from the psychiatrists. Away from SEID.

The inconvenient truth is well n truly out about what this disease really is n is not. No more confusion. No more organizational trash. It's OVER. If the SEID structure is used for real/true ME then okay. If not then the truth will quickly show it up for what it is n isnt.

 

[Paw]

If the SEID structure is used for real/true ME then okay. If not then the truth will quickly show it up for what it is n isnt.

But you've made it clear you think the SEID criteria are insufficient for describing "real/true ME." It's my understanding that SEID criteria were the result of many top researchers incorporating just about all the data they could get their hands on. It was precisely because ME did not consistently correlate to specific causes and/or manifestations that the IOM felt a larger umbrella would be more useful, right?

Yet you make it sound almost like a conspiracy against the "true" ME sufferers. I don't know why anyone here -- or researchers, or government, or doctors, for that matter -- would be invested in ignoring clear evidence of a specific identifiable disease. Despite the clarity you've gained from your own experience, the data just isn't there yet to support such a clear, "simple" definition.

While we await such data, I'm having a lot of trouble understanding why you (or others) are so intent on differentiating "true" ME from other conditions that fit SEID criteria. Maybe someone can explain the passion? I'm kind of a newbie to this stuff (sick for only four years).

Am I correct that one of the missions of this site was to create a community of people who fall under a broader umbrella? Not only so that we could share our experiences of what helps, etc, but also so that we all could play some small role in bringing about greater understanding of how these overlapping manifestations might be connected?

 

[weyland]

While we await such data, I'm having a lot of trouble understanding why you (or others) are so intent on differentiating "true" ME from other conditions that fit SEID criteria. Maybe someone can explain the passion? I'm kind of a newbie to this stuff (sick for only four years).

So that research can be done on well defined, homogeneous cohorts and subtle but important findings aren't missed.

Research has shown that the broad CFS definition and the newer ME definitions select different groups of patients. This opens up the possibility that research done on one group may not apply to the other. If we assume they are all the same something might be missed.

 

[Paw]

So that research can be done on well defined, homogeneous cohorts and subtle but important findings aren't missed.

Research has shown that the broad CFS definition and the newer ME definitions select different groups of patients. This opens up the possibility that research done on one group may not apply to the other. If we assume they are all the same something might be missed.

Hmm. That doesn't really answer my question about the passion here. Again, I'm all for science achieving more specific findings, but if there's been a consensus on consistent ME criteria I haven't seen it. So SEID was an attempt to get as specific (and constructive) as possible -- as of last year. Seems like everyone who issues more specific proclamations, at this point, are simply issuing opinions, no?

 

[weyland]

Hmm. That doesn't really answer my question about the passion here.

The passion comes from ME patients being tired of being conflated with chronic fatigue.

but if there's been a consensus on consistent ME criteria I haven't seen it.

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

So SEID was an attempt to get as specific (and constructive) as possible -- as of last year. Seems like everyone who issues more specific proclamations, at this point, are simply issuing opinions, no?

SEID was an attempt to get as general as possible, to encompass the broadest, minimal set of symptoms that could potentially select ME or CFS with PEM. The IOM is just issuing their opinion, doesn't make it any better than the other consensus criteria out there.

 

[Tony L]

I can't see any point in fiddling around with criteria until the science starts to define disease status in ways which can be successfully applied to the wider patient group. Then we will be able to understand the nature of the relationships between the various subgroups and perhaps redefine them in a way which may actually be useful for the application of 21st century medicine.

 

[Strike me lucky]

I can't see any point in fiddling around with criteria until the science starts to define disease status in ways which can be successfully applied to the wider patient group. Then we will be able to understand the nature of the relationships between the various subgroups and perhaps redefine them in a way which may actually be useful for the application of 21st century medicine.

We need a biomaker/s to maybe go with current criterias like CCC. Also have to realize its a spectrum disease.

 

[EYAKLLE]

It was turned into a spectrum. Catastrophically.

 

[Strike me lucky]

It was turned into a spectrum. Catastrophically.

No its a spectrum of severity as well as increasing symptoms. Not everyone has the same severity.

 

[Paw]

The passion comes from ME patients being tired of being conflated with chronic fatigue.

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

No, no, no. That's just another of several attempts to agree upon a menu of symptom patterns. It does not identify specific concrete lab tests or viral causes, etc. So it's qualitatively no different from SEID: evaluating patient symptom history. Eyaklle has been suggesting ME identification does not need be so interpretive.

SEID was an attempt to get as general as possible, to encompass the broadest, minimal set of symptoms that could potentially select ME or CFS with PEM. The IOM is just issuing their opinion, doesn't make it any better than the other consensus criteria out there.

That may be true about IOM, but you're proving my point: we're still discussing competing opinions, not agreed-upon hard science. SEID is the most recent attempt at this, and in their report they explain why they still thought it necessary to keep revising/debating criteria. Seems like some here prefer to peruse all the literature from over the years and then proclaim that the one they identify with most is the Real Deal.

BTW, I've yet to find a doctor (from GPs to various specialists) who was willing to order a comprehensive panel of viral labs (or a number of other possibly relevant tests). So, even if I were convinced that folks here are 100% correct in identifying "true" ME, I would have a nearly impossible time finding out whether it would be permissible for me to use the label without offending someone. Meanwhile, my symptoms match ample criteria from all three menus we've discussed here so far.

 

[weyland]

No, no, no. That's just another of several attempts to agree upon a menu of symptom patterns. It does not identify specific concrete lab tests or viral causes, etc. So it's qualitatively no different from SEID: evaluating patient symptom history. Eyaklle has been suggesting ME identification does not need be so interpretive.

That's what the accompanying clinician primer is for. I don't agree with what he's saying. I think ME diagnosis needs to be far more rigorous than SEID, maybe even more rigorous than the ICC criteria. This was the point I was trying to make about PEM. PEM as described right now is almost as vague as fatigue, especially from the IOM SEID perspective.

Seems like some here prefer to peruse all the literature from over the years and then proclaim that the one they identify with most is the Real Deal.

This only makes sense. People are going to identify with whatever description fits best with their experience. For me, my onset was exactly as described by Melvin Ramsay. His research and that of his contemporaries identified enteroviruses as one likely cause of the disease they were calling ME. This is exactly what was found in me and finding this has allowed me to access treatment that helps alleviate symptoms. If I had just been content to be stuck with the CFS or SEID label I'd have no clue what might be wrong because nobody knows what causes CFS or SEID and it's likely not any one thing.

BTW, I've yet to find a doctor (from GPs to various specialists) who was willing to order a comprehensive panel of viral labs (or a number of other possibly relevant tests). So, even if I were convinced that folks here are 100% correct in identifying "true" ME, I would have a nearly impossible time finding out whether it would be permissible for me to use the label without offending someone. Meanwhile, my symptoms match ample criteria from all three menus we've discussed here so far.

Don't worry about offending us, you're the one that has to live with your illness. Everyone deserves the most extensive workup and accurate diagnosis possible. I'm sorry to hear that you've not been able to get this, you're definitely not alone.

 

[Paw]

This only makes sense. People are going to identify with whatever description fits best with their experience. For me, my onset was exactly as described by Melvin Ramsay. His research and that of his contemporaries identified enteroviruses as one likely cause of the disease they were calling ME. This is exactly what was found in me and finding this has allowed me to access treatment that helps alleviate symptoms. If I had just been content to be stuck with the CFS or SEID label I'd have no clue what might be wrong because nobody knows what causes CFS or SEID and it's likely not any one thing.

Thanks for the perspective Weyland. Makes perfect sense. I just have have trouble when people start declaring absolute truths based on their individual experiences. Since the disease is, as yet, multifaceted and mysterious, I think such statements wind up adding to the confusion, rather than clarifying. But I love hearing accounts of individual discoveries (like yours), because they give me new things to consider.

 

[EYAKLLE]

I feel uncomfortable with how people always in the past spoke of a spectrum, or an umbrella of diseases, of a complex misunderstood multifactorial disease.....molds,persistent symptoms n niggles of different magnitudes,nutrition,allergies,hormones,cytokines n chemokines testing in the chronically molded or chronically virally fatigued, here there n everywhere n any which way u want it served up with three years of chilli peppers then 3 years of carrots in a mixed cohort of anything,while going after a bogus xmrv silverman virus instead of xmrv-mikovits/ruscetti.

It led to masses of misdiagnoses and the creation of non ME which became CFS while true ME, retroviral ME, was put in the same bag.

Catastrophic.

Retroviral ME patients deserve better.
CFS spectrum patients deserve better.

 

[Strike me lucky]

I feel uncomfortable with how people always in the past spoke of a spectrum, or an umbrella of diseases, of a complex misunderstood multifactorial disease.....molds,persistent symptoms n niggles of different magnitudes,nutrition,allergies,hormones,cytokines n chemokines testing in the chronically molded or chronically virally fatigued, here there n everywhere n any which way u want it.
It led to masses of misdiagnoses and the creation of non ME which became CFS while true ME, retroviral ME, was put in the same bag. Catastrophic.

There is no test for real ME whatever that may be. Until then the best one can come up with are symptoms.

Not to different to the early days of aids when people were grouped into the infections, cancers or symptoms they had. People dont die of aids but die from these cancers and coinfections they have.

If there is a test out there for real ME , then its not available to 99.9% of mecfsers.

 

[EYAKLLE]

This has been going on since the 80's.
40 years almost.
Layer upon layer upon layer upon overlap.

I always ask myself, on all these dedicated ME healthboards how many REALLY have the real deal. I reckon divide the members number by SIX and there you d probably really have it. But hey we re all one big happy family so lets share , compare n empathize for all these illnesses.... why not.... It s not the patients faults at all. It s the system and the structures in place n the reseaechers from the 80s onwards n up to this very day that messed up

 

[Strike me lucky]

This has been going on since the 80's.
40 years almost.
Layer upon layer upon layer upon overlap.

I always ask myself, on all these dedicated ME healthboards how many REALLY have the real deal. I reckon divide the members number by SIX and there you d probably really have it. But hey we re all one big happy family so lets share , compare n empathize for all these illnesses.... why not.... It s not the patients faults at all. It s the system and the structures in place n the reseaechers from the 80s onwards n up to this very day that messed up

The first ME outbreak they think happened in the 1930s so another 50yrs on top of that from what we know. I agree theres many misdiagnosed with ME and im sure there has been studies on this. The problem comes down to what is real ME?? One very common misdiagnoses is ME for MS and vice versa.

So really all people can treat are symptoms like sleep, pain, mood as well as abnormal labs found like infections and hormones etc. Most of these are a consequences and not the cause. One example is most people with chronic health condition have low dhea. So treating low dhea may help but isnt a cure.

Most of us are plugging the holes in the dike. Some of us have more holes than others unfortunately.

 

[GracieJ]

@EYAKLLE

What year did you get sick?

Do you agree with the ICC or not? Do you fit in with those criteria or not?

Curious...

When I first came on ME/CFS forums, the fact that I function at a 7 upset a few people, who insisted there was no way I had ME, "just CFS," and really did not belong. It was puzzling and upsetting until I understood what was going on. "Real" ME... Did I need a badge? a star on my belly?

Until more is known, describing it in terms of spectrums is valid. I would not wish what is called CFS-lite on anyone for even ten minutes any more than I would wish the symptoms of the sickest 25% on anyone for even ten minutes.

This is not any kind of Olympics.

 

[EYAKLLE]

GracieJ. Around 1994-1998 slowly.
Was at 50%. Like u, that upset some.
I m not big on criteria,though i think the icc ones are ok from memory. But it s more Melvin Ramsey s that are historically relevant I would still say.

Strike Me Lucky : I see your point. Very valid indeed.