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Patients to DHHS: Fix the Broken ME/CFS Case Definitions NOW!

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On May 12 - International Awareness Day for ME/CFS/FM/MCS/etc - Phoenix Rising joined with 8 other US ME/CFS patient organizations and 26 independent patient advocates to call on the Department of Health and Human Services (DHHS) to finally fix the problem of the many and diverse case definitions associated with our disease. In a letter to Secretary Sebelius, Dr Howard Koh, Dr Thomas Frieden and Dr Francis Collins, we explained our concerns about the current definition activities of the DHHS in relation to "Chronic Fatigue Syndrome", and listed the steps we believe must be taken to rectify the situation.

You can read our letter to the DHHS here.

The signatories on the letter are:

Chronic Fatigue Syndrome, Fibromyalgia and Chemical Sensitivity Coalition of Chicago, CFS/Fibromyalgia Organization of Georgia, Inc., MAME (Mothers Against Myalgic Encephalomyelitis), PANDORA (a.k.a. CFS Solutions of West Michigan), Phoenix Rising, The Fibromyalgia-ME/CFS Support Center, Inc., Rocky Mountain CFS/ME and FM Association, Speak Up About ME, Wisconsin ME/CFS Association, Inc., Bobbi Ausubel, Rich Carson, Lori Chapo-Kroger, R.N., Kati Debelic, R.N., Mary Dimmock, Pat Fero, MEPD, Joan Grobstein, M.D., Jean Harrison, Eileen Holderman, Suzan Jackson, Jill Justiss, Mindy Kitei, Michele Krisko, Denise Lopez-Majano, Mike Munoz, Matina Nicolson, Donna Pearson, Leela Play, Justin Reilly, J.D., Mary Schweitzer, Ph.D., Meghan Shannon MS MFT, Marly Silverman, Rivka Solomon, Tamara Staples, Charlotte von Salis, J.D., Michael Walzer.

For those of you who wish to sign this letter and become a part of this important initiative, we will provide a mechanism to do that within a few weeks and will send out additional information at that time.



Why have we written this letter?

Of all the issues that we face today, the one issue that has created the most problems is the diverse case definitions associated with our disease. This single issue has severely impacted research, drug development and clinical care and misled the medical community on the very nature of this devastating disease, causing many doctors to not believe that their patients are really sick. Until this issue is addressed, patients will continue to pay the price. This must stop now.

Today, the CDC states that there are at least 5 different definitions for “CFS”. Three of these definitions - the Canadian Consensus Criteria, the ME International Consensus Criteria and the Pediatric Criteria - require hallmark criteria like PEM/PENE and neurological, immunological and energy production impairments. Unfortunately, two of the most commonly used definitions, Fukuda and Oxford, do not require these hallmark criteria. In fact, Oxford only requires 6 months of disabling fatigue - no other symptom - and allows primary psychiatric disorder.

The result? Myalgic encephalomyelitis, the disease seen in outbreaks throughout the twentieth century and recognized by the World Health Organization in 1969, has disappeared, and in its place we are left with “CFS”, an amorphous umbrella of unrelated fatiguing conditions including, according to the literature, depression, deconditioning, medically unexplained chronic fatigue, and for some researchers and clinicians, fatigue due to “excessive rest” or “false illness beliefs”. In clinical practice, the diagnosis of CFS is given to a heterogeneous mix of patients – those with ME, those with the varied fatiguing conditions listed above, and those who were misdiagnosed or whose doctors use the diagnosis of CFS as a catch-all for unexplained fatigue. And in 2012, an American Family Physician article proclaimed that Oxford and Fukuda are the appropriate definitions for “CFS” and further stated: “[CFS] patients with poor social adjustment, a strong belief in an organic cause for fatigue, or some sort of sickness benefit (i.e., financial incentive) tend to have worse responses to [cognitive behavioral] therapy.”

Exactly what disease are we talking about here?

Patients have paid dearly for the proliferation of these overly broad and non-specific definitions – bedbound or homebound, unable to work or take care of their families, suffering for 10, 20, 30 or more years from the myriad symptoms that plague their bodies, unable to get adequate medical care and ultimately more likely to die prematurely from cancer, cardiovascular disease and suicide.

As Dr. Carruthers stated in the ME International Consensus Criteria, “Research on other fatiguing illnesses, such as cancer and multiple sclerosis, is done on patients who have those diseases. There is a current, urgent need for ME research using patients who actually have ME.” We must have a disease appropriate definition for ME that is separate and distinct from all the other unrelated conditions encompassed by the overly broad, fatigue-focused “CFS” definitions.


What are we asking for?

Our letter to the DHHS asks them to:
  1. Adopt a disease-appropriate case definition for ME now, utilizing the Canadian Consensus Criteria as recommended by DHHS’ own advisory committee CFSAC, and train doctors with appropriate medical guidance.
  2. Stop using the terms “CFS” and “Chronic Fatigue Syndrome” along with the non-specific definitions like Fukuda and Oxford and the medical education material based on these definitions.
  3. Manage the adoption of the Canadian Consensus Criteria to ensure that insurance and disability do not lapse and that no patients fall through the cracks.
  4. Fully engage ME stakeholders in the planning and execution of the adoption of the Canadian Consensus Criteria.
Is this the right thing to do?
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You may ask whether we really know enough about the disease or whether we need more study before we change definitions. Certainly, with more study, we can better operationalize the definition and validate biomarkers to make patient diagnostics easier. But in the meantime, we know that PEM/PENE is a hallmark symptom that reflects a distinctive biological pathology and we must utilize a disease definition that requires that symptom.

Some of you may prefer the ME International Consensus Criteria over the Canadian Consensus Criteria. The ME-ICC certainly has some excellent features. But practically, the Canadian Consensus Criteria has been used clinically and in research for a decade. Studies have been done with it. The U.S. government has posted the IACFS/ME Primer, based on the Canadian Consensus Criteria, on DHHS’ Guidelines.Gov. This is more likely to be acceptable to DHHS and is a reasonable first step, especially when considered against the alternative of continuing to use Fukuda while more study is done.

What about dropping the name “CFS”? You may be concerned that this means we will lose the literature base that has provided insights into the pathology of ME. Admittedly, some of the best articles used the term “CFS”. And so do some of the worst. The point is that the literature base is a mess because multiple diverse and unrelated definitions have inexplicably been allowed to use the very same name for years. We all should stop using the term “CFS” because it no longer has any real meaning.

Finally, what about the name ME? Does it really describe the disease? Is there a better name? That is a question that science will need to decide over time, something that has happened in many other diseases. But what is clear is that “chronic fatigue syndrome” will never be an appropriate name and should never have been established as the alternative or synonym for ME.

Patients have borne the brunt of the failure to address the definitional issues for the last thirty years. We cannot wait for more study to finally stop the harm being done to patients, especially given that more study with non-specific definitions will only perpetuate the problem. The time to address this problem is now.


Questions and Answers

We realize that patients, carers and advocates may have a number of questions about this initiative, and we hope that the following questions and answers will address any concerns you may have.


1. We can not abandon the patients that have been incorrectly given a “CFS” diagnosis.

This is very true. It is critical that implementation of this change is carefully managed so that these patients are re-evaluated and given a correct diagnosis. If unexplained conditions remain, it will be necessary to perform the studies needed to understand these conditions and establish more appropriate names and definitions.


2. We can not afford to have our disability or insurance impacted.

Yes, this is very important. It will be important to have a carefully thought out implementation plan that manages this to ensure that patients do not lose disability or insurance benefits.


3. The vast majority of the 6000 articles in the literature use the name “CFS”, not “ME. If we stop using the name “CFS”, we will lose all that literature.

Currently, when the search term myalgic encephalomyelitis is used, the CFS literature is returned. This will not change. But that literature base contains both articles relevant to ME and also a significant number of articles about “CFS” and child abuse, false illness beliefs, deconditioning, etc. This creates significant confusion for anyone trying to use that literature. For that reason, the non-specific term “CFS” should be abandoned by the U.S. and more specific terms like ME used going forward.


4. We have more important issues to deal with such as funding, and attracting new doctors and researchers.

It is critical that we have more funding but if we don’t fix the definition issue first, we will continue to study the wrong disease and have progress impeded by poor definitions. The resultant confusion will make it difficult to attract young researchers and doctors who will not see career opportunity in “CFS”.


5. Research centers have recently been established and if we stop using the name “CFS” we will confuse our donors.

It is true that a number of research institutes have recently been opened and some of them use the term “”CFS” or even “CF”. But the donors to these institutes today have a personal connection to the disease. They will continue to fund. Attracting additional funders, however, will be negatively impacted by the confusion around the disease. The sooner we can resolve this issue, the better in the long run.


6. CFS biobanks have been established using Fukuda and we don’t want to lose those samples.

The biobanks that have only been characterized by the Fukuda definition could contain a mix of patients with the hallmark criteria of ME and those who do not have these hallmark criteria. Using these mixed samples will continue to confound research. It is important that we have a well-characterized set of samples in the biobank and know which samples are from ME patients.


7. ME may not be the right name. Shouldn’t we wait for the science to figure out what the right name is?

It is possible that with further study, we will determine a better name than ME and it will naturally evolve. But ME, adopted by the World Health Organization in 1969, is the best placeholder until that time and avoids the serious issues caused by the use of the term “CFS”.


8. The best course is to tighten up the “CFS” definition, not get rid of it. Then we can keep the literature base, the biobanks, etc.

There are two problems with this approach. First is the long history of the term “CFS”, which is non-specific and now widely associated with diverse conditions, especially including psychiatric issues. This has severely tainted the term and made it clinically meaningless. Second, the term “CFS” is used for those studying patients that meet Oxford criteria (essentially chronic fatigue) and we have little control over that continued usage.


9. Lenny Jason recently published a paper that reports that the ME-ICC and the Canadian Consensus Criteria include more psychiatric co-morbidities than the Fukuda and recommends that more study be done. Does that mean we should wait to recommend any criteria until then?

  • Dr. Jason’s paper did find that the ME-ICC found more psychiatric co-morbidity than Fukuda. But Dr. Jason acknowledged the need for more study because this one used a questionnaire designed for Fukuda CFS, and that they were unable to assess one of the key ME-ICC criteria because data on this criteria was not available. Further, the study did not look at homebound or bedbound patients.
  • But what is also significant in Dr. Jason’s study is that ME-ICC identified a much tighter group of patients (39 compared to 113 for Fukuda) with more of the functional impairments and physical, mental and cognitive problems seen in ME-ICC patients than in those meeting the Fukuda criteria.
  • Clearly additional study is needed to operationalize the definition and to improve how it characterizes the disease, especially around subtypes. But continuing to use the 19-year-old consensus-driven Fukuda definition - which is also not operationalized and does not describe subtypes - in the meantime is not going to advance that knowledge and will only continue to hurt patients.
  • The Canadian Consensus Criteria has been used clinically and in research for over 10 years and better represents the disease. Using the CCC now will allow us to begin to make forward progress in research and identifying treatments, and begin to address the disbelief in the medical community.
10. Is this the same thing as the Name Change initiative?

No. This is first and foremost about the definition being used – adopting a definition that effectively describes the disease and stopping the use of the definition – and name – that have created so much confusion and so many problems.


11. Why CCC and not ME-ICC?

The CCC has been used clinically and in a number of studies, providing the experiential foundation for its use. It is expected that as additional data is obtained, this definition will evolve. This must be done in partnership with the experts who developed the ME-ICC and the CCC.



We hope and believe that this initiative will be welcomed by the majority of the patient community, and we hope that the questions above have addressed any concerns. Of course there is always room for debate over details, but very few if any of us are happy with the existing definitional mess, and this letter represents a consensus amongst 9 patient organizations and 26 independent advocates on the best path towards change. As such, we encourage the community to get behind this initiative and seize this opportunity to resolve the problem of the broken case definitions used for our disease.




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I am not sure I understand your post above.
As I understand it, the cardiopulmonary exercise test that's included the CCC might be given to heart or lung disease patients as well to determine their functional capacity and disability category. Dr. Unger is willing to use such a test. She said at the CFSAC meeting, "So our goal, and we've discussed it with some consultation of exercise physiologists, that there is something, good data, that we can get from a maximal exercise test that can be done at one day."

According to the ME Primer though, the test for PENE gives results that are unique to ME. “In a 2 consecutive day comprehensive 8-12 minute cardiopulmonary exercise stress test (measuring heart, lung, and metabolic function), only ME patients have significantly worse scores the second day & abnormal recovery from exertion:”
* Exercise tolerance test with expired gas exchange - (2 consecutive days) – measure cardiovascular, pulmonary & metabolic responses at rest & during exercise: peak oxygen consumption VO2 or VO2 at anaerobic threshold (AT) - decline of 8% or greater on test 2 indicates metabolic dysfunction, post-exercise blood analysis - increase in sensory, adrenergic and immune genes - increase in metabolite receptors unique to ME
Therefore, PENE "can differentiate ME patients from those who are depressed or have other fatiguing conditions."
 
This quotation from the ME Primer refers to the ICC: "The criterial symptoms, such as the distinctive abnormal responses to exertion can differentiate ME patients from those who are depressed or have other fatiguing conditions." It's taken from the action plan that I referred to in my earlier post. The ICC uses PENE.

Here is the test for PENE:

PENE:
A 2 consecutive day comprehensive 8-12 minute cardiopulmonary exercise stress test (measuring heart, lung, and metabolic function) - only ME patients have significantly worse scores the second day & abnormal recovery from exertion.* Exercise tolerance test with expired gas exchange - (2 consecutive days) – measure cardiovascular, pulmonary & metabolic responses at rest & during exercise: peak oxygen consumption VO2 or VO2 at anaerobic threshold (AT) - decline of 8% or greater on test 2 indicates metabolic dysfunction, post-exercise blood analysis - increase in sensory, adrenergic and immune genes - increase in metabolite receptors unique to ME

Here is the definition:

This is PEM taken from the CCC




I wonder what the difference is in the PENE from the ICC and the PEM from the CCC? To me they sound the same except that PENE goes more into detail.

This is the exercise test taken from the CCC: ”Cardiopulmonary Exercise Testing: AMA Guide for Evaluation of Permanent Impairment. Lower cardiovascular and ventilatory values at peak exercise help determine functional capacity, and peak oxygen consumption levels determine disability categories.”

Thanks much appreciated :)

Perhaps I should have been more succinct. I meant in relation to other distinct medical conditions in which PEM might apply.

For example there is a study underway that is looking at PEM in ME and whether or not it applies (and to what it extent it might) in Cancer I recall.

I was thinking myself about e.g. arthritis and perhaps rheumatoid although osteo might also be a worthy candidate.

I believe Newton is looking at Primary Billiary Cirosis. But one could even look at MS. Indeed any 'fatiguing' condition that does not fall within the CFS/ME umbrella.

We need to better evident that ME does indeed have this distinct characteristic. That someone with MS doesn't also feel extremely worse after exertion. If you see what I mean.

Publish some studies and then we might get taken more seriously and this PEM might be adopted as a distinguishing feature - and in some way applied across the board as something that can be tested for.

Does everyone with the kind of muscle-response abnormality - being found in e.g. Newton's work - also experience PEM? Is another consideration i.e. is it down to the muscles and bodily responses thereafter?

Is there a 'defect' of some sort biologically that is endemic in these people and are they the same people with PEM and other 'ME' (as opposed to CFS) characteristics/symptoms in whatever criteria one happens to conjure?

It is also hard to conceptualise what might happen if you were to 'lose' PEM as a noticeable symptom - would you then become 'CFS' or be 'cured'? But we've had these 'transition across the spectrum' discussions before...
 
I don't understand why some people are suddenly saying that depression involves post exertional malaise.
All my life, I've been told, categorically, that exercise is good for depression, and that depression responds positively to exercise.
Although, I never believed it, because this wasn't the case for me personally. My teenage depression never responded positively to exercise, ever. And I was extremely active.
I thought it is often said that one way to help distinguish ME from depression is that they both respond differently to exercise.
But I don't know what evidence all the above is based on, because I've never done much research in relation to depression.
Some of the 'experts' tell so many lies about CFS/ME, that it's quite possible that the 'experts' frequently misrepresent the facts about depression as well. Actually, I know that they do. And many of them are ignorant about the subject.
 
Firestormm, I agree that all aspects of CFS/ME need to be investigated further, including PEM.
But I have yet to hear of any other illness that features PEM in exactly the same way as CFS/ME.

I've always understood that other illnesses do indeed feature post-exertional fatigue, and perhaps even post-exertional malaise, but that it is the characteristics of PEM in ME patients (and a subset of CFS/ME patients) that makes it unique.

I think perhaps it would be more accurate to refer to it as a 'post-exertional symptom flare-up'.

PEM in ME is characterised by a delayed & prolonged adverse reaction to exertion in which a range of symptoms can increase in severity, including pain, exhaustion, and cognitive issues. This is perhaps unique in ME, and I've yet to see any information that demonstrates otherwise. (But I'd very much like to see it if there is any!)

And Ember says: "...according to the ME Primer, PENE is unique to ME", although I'm not clued up on the evidence on which they base this conclusion.

There is research in this area. Admittedly, probably not enough, or of good enough quality.

For example, this small study...

VanNess JM, Stevens SR, Bateman L, Stiles TL, Snell CR. (2010)
Postexertional malaise in women with chronic fatigue syndrome.
J Womens Health (Larchmt). 2010 Feb;19(2):239-44.
doi: 10.1089/jwh.2009.1507.
http://www.ncbi.nlm.nih.gov/pubmed/20095909

If anyone knows of any larger studies re PEM, I'd be grateful for the info.
I'm looking for some at the moment for a project that I'm doing.
 
...isn't it semantics at this point? :confused:

No, it's not semantics, it's the characteristics of PEM/PENE that are important.
For example, marathon runners experience post-exertional symptoms (e.g. fatigue, pain, exhaustion, weakness etc), but their post-exertional condition does not have the same as characteristics as PEM or PENE in ME patients.

Thanks Bob. Crossed posts. Will have a read later. Off to rest :)
OK, crossed posts again. Rest well. :)
 
Those in the know have tried over years to rename - bearing in mind the systems affected - neuro/endocrine/immune - and no single symptom fully describes though may predominate at given times. Now where is a definition - most likely to me the immune system.
 
No, it's not semantics, it's the characteristics of PEM/PENE that are important.
For example, marathon runners experience post-exertional symptoms (e.g. fatigue, pain, exhaustion, weakness etc), but their post-exertional condition does not have the same as characteristics as PEM or PENE in ME patients.


OK, crossed posts again. Rest well. :)

You say PENE I say PEM - that's the semantics I was referring to my friend. Not that medical-PEM wasn't unique :)
 
Some believe that PEM/PENE should really be more like PER - Post Exertional Relapse. By relapse, I mean that many of the symptoms of the illness either return or get worse. For example, when I experience PER, symptoms which I had when I originally became ill return, such as sore throat, chills, weakness and other symptoms get aggravated like pain, cognitive problems and sensory sensitivities. It's as if I'm back to square one - temporarily. I think that this issue seems to be unique to ME/CFS.
 
OK. I am going to say it - but maybe I just need to better appreciate where these people are coming from - isn't it semantics at this point? :confused:
PENE is key to challenging Dr. Unger, not to be dismissed as "semantics." Dr. Unger isn't yet willing to use the test-retest cardiopulmonary exercise protocol.

During the CFSAC meeting, the CDC was asked, “Are you including the 2-day CPET with gas measurements in the second phase of your study? If not, what measures of PEM and immune functioning are you using?” Here's my transcription of Dr. Unger's response, omitting Steve Krafchick's follow-up questions:
We are in the process of developing our exercise part of the phase II of our study. In our kick-off meeting with our clinicians, they felt that with our current study design and our current way that it fits in with their clinics that a 2-day protocol would not be advisable, although we had discussed it. And we are still in the process of developing that. So, and the other question was what immune measurements are we doing. And again for this particular phase of the study, we are not including immune measurements, although we are collecting all of the testing parameters that are being done on the patients. And that's one of the things that we're looking at, comparing the kind of testing that each of the clinicians are doing, and we'll have those results....

The outcome measures are outcomes in terms of function which is the information that we are collecting, function and their response to the questionnaires that measure their illness. OK, those are the outcomes. We also...this isn't a treatment trial, we are basically it's observation...what the clinical course is under the care of these clinicians. They have a variety of treatments that are being given. We're collecting information on what drugs they're taking. And again this is just a beginning gathering of data. And the difficulty that the clinicians had was many of these get patients from a distance. And they did not feel that they could come back for a second day. And they were worried again about the burden on the patients....

I definitely share that there are multiple ways to look at this question. And we have come up with this as our first approach. It's not going to be our last approach. So our goal, and we've discussed it with some consultation of exercise physiologists, that there is something, good data, that we can get from a maximal exercise test that can be done at one day....

It's really difficult to present the whole thought process behind the day two protocol, or you know our phase II protocol, but we are combining the exercise and the cognition parts together, so that we can measure changes in the worsening of the illness following exercise, and that's part of our design. And we're trying to have it be as amenable to multi-site and yet be standardized....

We're using some patients questionnaires. We're also using some cognitive testing that can be given online.
Dr. Unger wrote in her June 5 letter, “The need is not only for a case definition but also for reproducible standardized approaches to applying it, as well as for biomarkers to refine subgroups within the overall CFS patient population.” Why then won't she administer the test that distinguishes and allows for the separating out of ME? Her reasons sound more like excuses to me.
 
Some believe that PEM/PENE should really be more like PER - Post Exertional Relapse. By relapse, I mean that many of the symptoms of the illness either return or get worse. For example, when I experience PER, symptoms which I had when I originally became ill return, such as sore throat, chills, weakness and other symptoms get aggravated like pain, cognitive problems and sensory sensitivities. It's as if I'm back to square one - temporarily. I think that this issue seems to be unique to ME/CFS.

That's very interesting. I had exactly the same experience recently. I had a bad relapse, and it felt very flu-ish, including a mild fever, just like when I first became ill. Exactly like you describe, it felt like I was back to square one, but luckily this acute state was temporarily, as I started improving quite quickly (within a month or two), unlike the first time. I wonder if this sort of relapse is due to deconditioning! :rolleyes:

Also, my thyroid levels started playing up again (over-active thyroid on this occasion), the moment my relapse started, whereas my thyroid levels had been normal for ages previously. (My thyroid first went funny about three years after I got ME, and the levels fluctuate, sometimes clinically abnormal levels and sometimes sub-clinical.) The thyroid upset seemed to be directly related to the relapse.
Interesting that the thyroid levels should immediately shoot upwards, on the first day of my relapse. I wonder what could be learned from that, biologically. e.g. could it be related to a virus, or an endogenous retrovirus, or an autoimmune issue, or something else?
In an ideal world, I'd have some thyroid tissue taken for analysis, by an ME researcher.
 
Secondly and more deeply concerning, is that the language on the CDC website suggests that CDC may be intending to develop a definition for the broader “CFS” and consider everything else, including ME, a subtype of CFS.

This is a quote from the letter to DHHS.
From listening to Dr. Unger at the CFSAC meeting, I had the same feeling. I think that Unger believes that this is the case. I think that she believes that there is the broader CFS illness with subsets of which ME is one of them. How will this affect us if this becomes a reality?
 
I think that Unger believes that this is the case. I think that she believes that there is the broader CFS illness with subsets of which ME is one of them. How will this affect us if this becomes a reality?

Just some of my thoughts...

I think I have heard Unger talk about 'ME' as a separate entity, or as a subset of CFS, as if she is open minded to it, but I get the feeling that she is looking for high quality up-to-date empirical research results before she will entertain the idea seriously

Unger does seem to be pro-actively looking for subsets of CFS, in the CDC's diagnostic criteria study, which I think is the right direction of travel.
But I'm not convinced that she is pro-actively looking towards making ME a separate diagnosis, or a subset of CFS.

I get the feeling that she is open-minded towards the results of her study if any subsets show up.
But perhaps she isn't yet using the most sophisticated methodology, such as second-day VO2 Max testing.
She is now starting to look at some biological testing, and perhaps this will be an open-ended study until they get some useful results.
There has been explicit pressure on her to use VO2 Max two-day testing (e.g. at the CFSAC meeting), so perhaps there's a chance she will end up incorporating it into the CDC's research.

.
 
IIRC, VO2 Max testing usually requires two tests to show obvious problems in ME/CFS, but the Light's gene-expression test takes only one. Perhaps they are focusing on doing the latter here because it requires less equipment at the clinic? A single VO2 Max test may indicate some disability but this may be attributed to deconditioning, another focus of the CDC?
 
I don't understand why some people are suddenly saying that depression involves post exertional malaise.
All my life, I've been told, categorically, that exercise is good for depression, and that depression responds positively to exercise.
Although, I never believed it, because this wasn't the case for me personally. My teenage depression never responded positively to exercise, ever. And I was extremely active.
I thought it is often said that one way to help distinguish ME from depression is that they both respond differently to exercise.
But I don't know what evidence all the above is based on, because I've never done much research in relation to depression.
Some of the 'experts' tell so many lies about CFS/ME, that it's quite possible that the 'experts' frequently misrepresent the facts about depression as well. Actually, I know that they do. And many of them are ignorant about the subject.

I've seen some recent studies saying it isn't the case that exercise helps depression. Or at any rate, I saw the news articles. Don't know the quality of the study(ies).

It's my understanding that if you ask people with some depressive illnesses if they feel worse or more tired or something general like that, after exercsie, some percentage of them will say yes.There is some evidence for mitochondrial defects in MDD, BPD, etc., and this could be what is going on there although this is pure speculation, maybe it is something else.

Also in EDS (Ehlers-Danlos Syndrome; thus everywhere I use this abbreviation), people who do exercise (the specialists wil claim the wrong kind of exercise with joints not supported, thus walking is bad, swimming is good - I have no ability to evaluate this claim) will have an immune reaction producing joint pain the next day. Thus, a kind of PEM.

There may be other examples.

However as has been said, I am not sure that any other diseases have a reaction with feeling like one has flu, pneumonia, and a collapse in pulmonary function.

About the Stevens protocol, not everyone is able to do that (for example, it would have very severe consequences if I tried to do that), so it cannot be used as a diagnostic requirement.
 
IIRC, VO2 Max testing usually requires two tests to show obvious problems in ME/CFS, but the Light's gene-expression test takes only one. Perhaps they are focusing on doing the latter here because it requires less equipment at the clinic? A single VO2 Max test may indicate some disability but this may be attributed to deconditioning, another focus of the CDC?

I don't think repeat VO2max testing showing a decline on the second day can every be rationally attributed to deconditioning. So far we are the only disease group in which this is seen. This is why a single VO2max test is so limited, as you suggest biophile.

So far as we know this is unique to ME, but we do NOT know that for sure. Broad testing to validate this point has not been done to my knowledge, but I think it will be and I am hopeful this can be a diagnostic test, a treatment test, and a test to establish disability. In the meantime its the best test we have for one simple reason: lab facilities for VO2max testing, while not common, are ubiquitous. Every large hospital probably has one, and so do most sports clinics, plus there are probably private clinics. Moreover the facilities to do the testing run at about $50,000. However the kind of cytokine/hormone testing the Light's used it cutting edge labwork I think, though I could be wrong. The limiting factors with VO2max testing, especially repeat testing, are that severe to very severe patients can't do it, and it may be a stuggle to convince a lab to do repeat testing.
 
If Chronic Fatigue Syndrome (instead of myalgic encephalomyelitis) had it's own entry under neurology/nervous system in WHO - would we still be calling for (what is from one perspective), a name-change? Would it be as fundamentally important?

It would still be good to change the name because that one is inherently confusing.

It doesn't explain anything. Lupus, Multiple Sclerosis, cancer, vitamin D deficiency, major depressive disorder, Ehlers-Danlos Syndrome, and many more - all cause fatigue, plus normal healthy people experience fatigue both in healthy states (e.g. after work or exercise, before resting from that) and in not-so-healthy states (e.g. lack of sleep).

And so people who are tired sometimes or often and not diagnosed with something else (whether because it's not a pathological condition or because their doctor didn't look for or didn't find a cause) think they have "Chronic Fatigue Syndrome" whether they have any of the specific signs and symptoms that go with the actual disease of ME/CFS or not.

And even doctors and researchers may diagnose patients whether or not they have any of the specific signs and symptoms that go with the actual disease.

Also because people who are not sick experience fatigue, it sounds trivial. And politically, people don't want to help us partly because it sounds trivial (partly also because of the bad publicity, but I'm sure that's easy for them to accept and harder to deconstruct, because of the cheesy name). There are actually studies that show that (medical or nursing, forgot which) students and allied health professionals take the disease somewhat less seriously when it's named CFS as compared to ME or Nightengale disease.

As Alex3619 mentioned, the definition is more important to getting good science. In the end, it's good science (recent, high number of patients enrolled, replicated science) which will provide the impetus necessary to change the name and, most important, how we are managed (i.e. like patients with a proper serious disease, as we are - even if it's multiple diseases, we are each a patient with a proper serious disease).

And one day whatever it is we are called, that will sound serious to people the same way that MS, myasthenia gravis, and other such diseases do.

But we need an agreed diagnostic protocol (that health authorities accept and promote) which is not a diagnosis of exclusion, for that to happen.