Poll: Which name is better: Chronic Fatigue Syndrome or Systemic Exertion Intolerance Disease?

[SOC]

What kind of research will they do based on a criteria that doesn't even take into account neuro endocrine and immune problems? They will do research in fatigue and sleep?

Are you sure you've read the report? Neuro, endocrine, and immune problems are discussed at some length. @Bob has addressed this in a number of posts if you don't want to read the whole document.

SEID is a clinical definition, not a research definition. The simplest diagnositic criteria are just the beginning. There follows a lot of discussion about the details of the condition which can be taken into consideration in research environments.

In any case, no one says that just because the illness is defined by PEM that all that can be studied is PEM. The report discusses many details that suggest research directions in areas of neuro, endocrine, and immune dysfunction. Researchers in those areas will be looking for those research topics. Every researcher is eagerly searching for fresh new ground in their specialty area. The IOM report has given them that.

SEID, via PEM, simply identifies a group of patients with a unique characteristic we all recognize. SEID is not deconditioning, or MDD, or hypothyroid, or burn-out or many of the other things that came under the CFS definition. We need researchers to investigate all the vast array of symptoms associated with the condition defined by SEID. That is clear in the report, as far as I've read to date. Maybe SEID will bring in more patients than we've previously identified, but if they have PEM, then they're welcome into our general research cohorts as far as I'm concerned.

 

[daisybell]

From my experience, the endocrine and neuro-immune symptoms have developed after the initial fatigue and malaise... I would have been diagnosed under the proposed SEID criteria, but perhaps not under the CCC. I don't see how that is an advantage. Perhaps we will have a situation where more people with post-viral fatigue are diagnosed with SEID, or indeed see that the recovery rates are higher than expected, but at least we will be diagnosed!

The research has already shown that there seems to be a difference between those ill for less than three years and those ill for longer, and if that is factored in to new research, I don't see diagnosis with SEID as likely to cause problems for studying the patient cohort.

 

[Nielk]

Are you sure you've read the report? Neuro, endocrine, and immune problems are discussed at some length. @Bob has addressed this in a number of posts if you don't want to read the whole document.

SEID is a clinical definition, not a research definition. The simplest diagnositic criteria are just the beginning. There follows a lot of discussion about the details of the condition which can be taken into consideration in research environments.

In any case, no one says that just because the illness is defined by PEM that all that can be studied is PEM. The report discusses many details that suggest research directions in areas of neuro, endocrine, and immune dysfunction. Researchers in those areas will be looking for those research topics. Every researcher is eagerly searching for fresh new ground in their specialty area. The IOM report has given them that.

SEID, via PEM, simply identifies a group of patients with a unique characteristic we all recognize. SEID is not deconditioning, or MDD, or hypothyroid, or burn-out or many of the other things that came under the CFS definition. We need researchers to investigate all the vast array of symptoms associated with the condition defined by SEID. That is clear in the report, as far as I've read to date. Maybe SEID will bring in more patients than we've previously identified, but if they have PEM, then they're welcome into our general research cohorts as far as I'm concerned.

Why would you think that NIH would spend more money now with the SEID criteria than after the CCC and ICC criteria? They each came out with comprehensive reports as well.

It's not like this new report is the first reveal if the complexity of this disease.

 

[Sean]

The report reads very well - I agree. they seem to understand the disease very well and invalidate what we are going through. They have listened to us and taking us into account. They have read our comments.

I assume by invalidate you meant validate?

But, doctors are not going to read the whole report, except for our experts. What doctors are going to read is the handbook for practitioners that state the criteria of the disease.

So let's wait until we see that handbook before we dismiss it. It may well include some notes/discussion on secondary symptom and features, that will help as clinical background, if not be a part of formal diagnosis. Actually, I am fairly confident that any handbook is going to be a bit more in depth than just the bare criteria.

I do agree that the value of this new criteria and report will depend heavily on how effective any education program about it is for medical professionals, the media, and the public.

 

[Nielk]

Yes validate. Thank you. I'm typing in my iPhone in bed, with a headache. Not at my best.

 

[SOC]

Why would you think that NIH would spend more money now with the SEID criteria than after the CCC and ICC criteria? They each came out with comprehensive reports as well.

It's not like this new report is the first reveal if the complexity of this disease.

I honestly don't think we're reading the same report.

The CCC document and the ICC document, both good IMO, are nowhere near as comprehensive in their scope as the IOM report. And most critically, they were not officially sanctioned by HHS and are not considered objective in the way the IOM report is. The IOM report contains essentially all the information in the CCC document. It reads like they used the CCC as a baseline document. They did reduce the basic diagnostic criteria to an inclusive one that identifies the primary distinguishing characteristic of the illness. They definitely don't say that the primary distinguishing characteristic is the only characteristic, just that it is what distinguishes it from all other illnesses that also have pain, or OI, or GI symptoms, or endocrine abnormalities, or any of the many non-unique features of this dreadful disease.

The definition was never intended to describe ME/SEID in all it's myriad forms. It's goal was to identify it as a unique condition, distinct from all others. It does that, while going on to describe much of what is seen in the condition but is not universal (as far as we know so far).

 

[Nielk]

I honestly don't think we're reading the same report.

The CCC document and the ICC document, both good IMO, are nowhere near as comprehensive in their scope as the IOM report. And most critically, they were not officially sanctioned by HHS and are not considered objective in the way the IOM report is. The IOM report contains essentially all the information in the CCC document. It reads like they used the CCC as a baseline document. They did reduce the basic diagnostic criteria to an inclusive one that identifies the primary distinguishing characteristic of the illness. They definitely don't say that the primary distinguishing characteristic is the only characteristic, just that it is what distinguishes it from all other illnesses that also have pain, or OI, or GI symptoms, or endocrine abnormalities, or any of the many non-unique features of this dreadful disease.

The definition was never intended to describe ME/SEID in all it's myriad forms. It's goal was to identify it as a unique condition, distinct from all others. It does that, while going on to describe much of what is seen in the condition but is not universal (as far as we know so far).

In what way are the CCC and ICC not objective?

 

[SOC]

In what way are the CCC and ICC not objective?

I didn't say I don't think they're objective.

They are not considered objective by HHS because they were generated by people with an investment in treating the illness. One point of hiring the IOM and establishing a committee with members who have no financial benefit from how the illness is defined was to confirm that there was no bias in the definition.

I never thought there was bias in either the CCC or the ICC, but the very strong psych lobby claimed there was, so we had to jump through the hoop of confirming that the information was sound and unbiased. That was done by this committee. The psych lobby is going to have to find another trick to try to invalidate us.

Science wants data to be without bias. That's one reason the whole body of BPS "research" is not science. It is data collected to confirm a bias, not unbiased investigation. We should welcome all efforts to demand unbiased data. It can only benefit us and bring down the psych lobby.

 

[Nielk]

I'm afraid that I am really confused. What psych loby are you talking about that we had to satisfy?

 

[Valentijn]

Anyone who complains about fatigue of over six months who can sleep well could be diagnosed with it. When asked, are you more tires after increased activity? I can see many answering in the affirmative. Since no testing is demanded to demonstrate PEM (which i understand because of the risk of damage)., it is a subjective symptom.

Page 216 of the report (page 239 of the pdf) rather addresses this issue in Table 7.1.

Potential Questions for Eliciting the Medical History (all questions should explore frequency and severity of symptoms):
• What happens to you after you engage in normal physical or mental exertion?
• How long does it take you to feel bad?
• How long does it take to recover from physical or mental effort?
• If you go beyond your limits, what are the consequences?
• What types of activities do you avoid because of what will happen if you do them?

You're never going to completely avoid the problem of bad and lazy doctors. This document is more than sufficient for the rest. And when misdiagnosed SEID patients see another practitioner, that doctor will easily be able to figure out that it was a misdiagnosis.

 

[WillowJ]

They do not require exempting other similar disease.

A diagnosis of exclusion has been a reason for being laughed at and treated as a wastebasket diagnosis.

Not trying to think about other possible diagnoses is one way to tell a poor doctor. If the doctor is not doing this, it's because the doctor is not doing their job, not because the criteria is not working as intended.

But a diagnosis of inclusion--consider this disease if you have a patient who presents in precisely this way [rather than, oh, has fatigue and randomly at least 4/8 of these other symptoms, and maybe some other things as well, whatever], that short list of must-have's is a signal to doctors to take the diagnosis more seriously and to think it through carefully.

 

[Min]

Why take Myalgic Encephalomyelitis out of the mix? It is an excellent name for our illness, we do not need a new one.

 

[Nielk]

Page 216 of the report (page 239 of the pdf) rather addresses this issue in Table 7.1.


You're never going to completely avoid the problem of bad and lazy doctors. This document is more than sufficient for the rest. And when misdiagnosed SEID patients see another practitioner, that doctor will easily be able to figure out that it was a misdiagnosis.

I would have no problem if they would insist that specialists who will be well educate about the disease diagnose us and care for us. It doesn't make sense to have GPs take care of such a complex disease. I don't trust that they will know the real PEM.

@Valentijn, how can you compare the care that you get from KDM to GPs who are just going to give a sleeping pill to their patients.

I am not even thinking for myself, but I am fighting for this for the next generation. I am worried that if one of my children or grandchildren come down with this terrible disease, (for which there is a real possibility) that they will get the proper care. I would want them to have a KDM or Enlander who know all about the disease. who try all kind of treatments and have treated thousands of patients.

I think it is a grave mistake to leave it in the hands of GPs and to tell them to just treat the symptoms.

 

[Nielk]

A diagnosis of exclusion has been a reason for being laughed at and treated as a wastebasket diagnosis.

Not trying to think about other possible diagnoses is one way to tell a poor doctor. If the doctor is not doing this, it's because the doctor is not doing their job, not because the criteria is not working as intended.

But a diagnosis of inclusion--consider this disease if you have a patient who presents in precisely this way [rather than, oh, has fatigue and randomly at least 4/8 of these other symptoms, and maybe some other things as well, whatever], that short list of must-have's is a signal to doctors to take the diagnosis more seriously and to think it through carefully.

I think that to diagnose accurately should be what drives proper criteria for disease. Let's face it, we do not have a biomarker yet. PEM which is a distinguishable feature has no proper testing yet which is safe for patients to take. It is a subjective symptom. You really think that now with these four symptoms, we will be looked at as having a serious debilitating disease?

 

[Valentijn]

I would have no problem if they would insist that specialists who will be well educate about the disease diagnose us and care for us. It doesn't make sense to have GPs take care of such a complex disease. I don't trust that they will know the real PEM.

Yup, specialists would be better. Where are we supposed to get them from? I certainly don't want unwilling specialists of other diseases to get stuck with ME patients if they don't want them! That tends to turn out quite badly.

But the message that "this is a real disease and you need to treat the patients and their symptoms seriously" is quite an improvement over the current situation - or do you disagree? And I would rather hope that some good resources are produced with suggestions for treatment and testing. That's something we need to force HHS to implement.

The IOM report certainly is not the end of the matter. Some things could be improved, and a lot still needs to happen to implement it. But it's a start, and it's an excellent platform from which to demand those improvements.

 

[Nielk]

Yup, specialists would be better. Where are we supposed to get them from? I certainly don't want unwilling specialists of other diseases to get stuck with ME patients if they don't want them! That tends to turn out quite badly.

The IOM report could have chosen a specialty like neurology or immunology to take on this disease. Why are we any different than any other serious complex disease? Why are we willing to settle for less?

Why should specialists balk at treating us any more than other diseases?

But the message that "this is a real disease and you need to treat the patients and their symptoms seriously" is quite an improvement over the current situation - or do you disagree? And I would rather hope that some good resources are produced with suggestions for treatment and testing. That's something we need to force HHS to implement.

The Fukuda, CCC and ME-ICC all state that this is a real disease. The problem is that the psych lobby plays games with this disease because there is no biomarker. I don't see how that will be different. In addition, I don't know if you have read Jeannette Burmeister's new blog http://thoughtsaboutme.com/2015/02/...-ltd-benefits-hello-diluted-research-cohorts/ where she outlines the pitfalls of having a criteria that does not excluded existing mental issues.

 

[Scarecrow]

I would have no problem if they would insist that specialists who will be well educate about the disease diagnose us and care for us. It doesn't make sense to have GPs take care of such a complex disease. I don't trust that they will know the real PEM.

It doesn't have to be the same doctor diagnosing and managing. For example, the diagnosis of T1 diabetes mellitus is usually made by a GP but the patient is treated and monitored by an endocrinologist. If this report's recommendations are adopted, and the committee are correct that ME/CFS (SEID) is drastically under diagnosed, then people who are currently misdiagnosed with depression (or indeed have depression but can't get an accurate comorbid CFS diagnosis) are now going to get proper recognition. That will mean more people calling for effective treatment.

I think that to diagnose accurately should be what drives proper criteria for disease. Let's face it, we do not have a biomarker yet. PEM which is a distinguishable feature has no proper testing yet which is safe for patients to take. It is a subjective symptom. You really think that now with these four symptoms, we will be looked at as having a serious debilitating disease?

No reasonable person could disagree with your statements. If the committee's dissemination strategy (I've yet to get to that bit of the report) is effective, and the seriousness of PEM is properly conveyed, then the answer to your final question could well be 'yes'.

The various specialists in ME/CFS have their own favoured battery of biological tests that will inform their treatment of a patient but they are not in themselves diagnostic.

Without a biomarker, any doctor still has to start from somewhere. After all, whatever illness you happen to have, specialist testing is never done until there is a reasonable suspicion of a particular condition. If a biomarker for ME/CFS (SEID) is identified, not everyone who visits their GP complaining of being 'tired' is going to get automatically tested for ME/CFS (SEID). In all probability, you wouldn't get the test unless you have PEM. There is a possibility that down the line if nothing else more likely is identified, the doctor might think what the heck, nothing else fits either and run the test.

I agree with everything you've said about us needing specialists but its unfair to criticise the IOM committee for not doing a job that they weren't asked to do. They weren't given a free rein to do whatever they wished. They were tasked with recommending clinical diagnostic criteria and distinguishing between subgroups and a little bit more besides:

An Institute of Medicine (IOM) committee will comprehensively evaluate the current criteria for the diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The committee will consider the various existing definitions and recommend clinical diagnostic criteria for the disorder to address the needs of health providers, patients and their caregivers.

The committee will also distinguish between disease subgroups, develop a plan for updating the new criteria, and make recommendations for its implementation. Any recommendations made by the committee will consider unique diagnostic issues facing people with ME/CFS, specifically related to: gender, across the lifespan, and specific subgroups with substantial disability.

Specifically the IOM will:
• Conduct a study to identify the evidence for various diagnostic clinical
criteria of ME/CFS using a process with stakeholder input, including
practicing clinicians and patients;
• Develop evidence-based clinical diagnostic criteria for ME/CFS for use by
clinicians, using a consensus-building methodology;
• Recommend whether new terminology for ME/CFS should be adopted;
and
• Develop an outreach strategy to disseminate the definition nationwide to
health professionals.

 

[Valentijn]

The IOM report could have chosen a specialty like neurology or immunology to take on this disease. Why are we any different than any other serious complex disease? Why are we willing to settle for less?

Because doctors can be abusive and useless dickwads when someone makes them treat patients who have an illness they do not believe in. At least, that's been my personal experience when referred to neurologists.

 

[Sidereal]

No speciality wants to touch us with a ten foot pole due to no easily measurable biomarker and what are seen as time-consuming heartsink patients. IOM can't "force" neurologists or rheumatologists to take us on and treat us with respect. Change doesn't happen by government decree. All we'd get is abuse anyway even if the report had named a specialty that should treat us.

ME has been designated a neurological illness in the ICD for almost 5 decades and what good has that done? Has anyone here seen a neurologist who treated them as if they had a serious disabling neurological disease? It must be an exceedingly rare occurrence.

The only thing that's going to sway opinion is better science. The science on biological mechanisms of ME is simply not good enough at present, and no amount of wishing it away or repeating the same inaccuracies over and over again is going to change that fact. Where is the evidence that ME is a neurological disease? I really don't understand our advocacy groups sometimes.

 

[Tired of being sick]

What the wrong with Myalgic Encephalomyelitis?