When 26 patient organizations and advocates sign a letter urging the government to do something it’s time to sit up and take note. Alot of good, smart and effective people support the move to press the federal government to use the Canadian Consensus Criteria (CCC) in all their programs. The patient response on Phoenix Rising , not surprisingly, has been enthusiastic.
Advocates and organizations have banded together to prod the federal government to adopt the Canadian Consensus definition
Feather Ruffling Time
But is it the right thing to do? With all due respect to all the work and energy that’s gone into producing the letter and now the petition, I propose not. I think the effort,while obviously well intentioned could have negative consequences.
I believe focusing on post-exertional malaise is the ticket out for ME/CFS, and given the CCC’s emphasis on that I’ve always assumed the CCC, or a definition close to it, would play a major role in getting this disorder understood and treated. The CCC had everything the Fukuda definition didn’t; it was homegrown in the ME/CFS community, it got buy-in from major ME/CFS figures, it focused on the core symptoms…it seemed perfect.
One question -‘ Where was Lenny Jason” – always nagged, though. Our foremost expert on definitions and the author of over 18 studies on ME/CFS definition and symptom characterization, Lenny Jason was not anywhere to be found. Surely he, of all people had been asked but he didn’t participate. Two studies in the last year suggested a reason why.
The studies suggested the Canadian Consensus Criteria got it almost all right; it was designed by physicians with great experience with this disorder, it highlighted core aspects of the illness (PEM and cognitive issues), and did away with the emphasis on fatigue but it may has one major flaw that could be devastating. That flaw could inadvertently assist ME/CFS in being viewed as a psychological disorder.
Two studies by the DePaul Jason group suggest both the CCC and ICC may select for ME/CFS patients with very, very high rates of mood disorders. That the definitions select for more disabled patients suggests some increase in the rate of psychiatric disorders would be expected but not to the rate found in Jason’s studies. A 2013 study found that over 60% of the patients selected by the International Consensus Criteria had a psychiatric disorder. A 2012 study found that 58% of CCC selected patients had a mood disorder. With the average rate of mood disorders in cardiac disease ranging from 17-27%; in cancer from 22-29%, in diabetes from 9-26%, that percentage of mood disorder appears to be unmatched in the annals of chronic non-mental illnesses.
The studies had their flaws and need to be redone; they may have greatly overestimated the rates of mood disorder in CCC/ICC selected patients. It’s also possible that ME/CFS is associated with high enough rates of mood disorders for it to be classified as a psychiatric disorder. The most likely explanation, however, is that the way the ICC and CCC are formed pre-selects for groups of patients with high rates of mood disorders. In fact the history of ME/CFS bears this out.
Deja Vu All Over Again?
The (chronic fatigue syndrome) patients with the highest numbers of medically unexplained physical symptoms had extraordinarily high rates of current and lifetime psychiatric disorders. Katon and Russo, 1992
The Jason groups study suggests defining chronic fatigue syndrome is more complex than expected
The first definition for chronic fatigue syndrome, the Holmes definition, required 8 symptoms but when a study by Katon and Russo came out suggesting that more symptoms meant more psychiatric diagnoses, work on a new definition – the Fukuda definition began. (Nobody likes the Fukuda but consider what the last 20 years would have been like using a definition that came closer to labeling ME/CFS as a psychiatric disorder?)
The cure was simply to reduce the number of required symptoms from eight to four. That worked – the number of psychiatric diagnoses dropped into the normal range for chronic illnesses but Fukuda erred by allowing any four of eight symptoms to qualify a person for CFS. That meant someone could conceivably qualify for ME/CFS without having post-exertional malaise, cognitive problems and unrefreshing sleep. That almost certainly meant the Fukuda definition was allowing at least some people into studies who did not have ME/CFS.
The CCC and ICC were designed to fix that fault and the Jason studies have suggested they did. Two studies indicated that the the ME/CFS patients meeting the CCC and ICC criteria were significantly more cognitively and exertionally challenged than those meeting the Fukuda criteria.
These data suggest that the current case definition for chronic fatigue syndrome inadvertently selects for patients with the highest prevalence of lifetime psychiatric diagnoses Katon and Russo, 1992
Both, however, required that patients have high numbers of very different symptoms. Like the defunct Holmes definition the ICC requires that eight symptoms be present and the CCC requires seven. Because people with more severe illnesses are probably more likely to have mood disorders an increased rate of psychiatric disorders might be expected in this group but the percentage of psychiatric disorders were so much higher in both the CCC (58%) and ICC selected groups (61%) compared to the Fukuda group (27%) that more than illness severity must have been in play.
Indeed, in an analysis between the CCC and the London ME definition, Jason suggested that the definition itself, not the increased severity was probably, although not certainly, the reason for the increased rates of psychiatric disorders.
The lack of differences on the psychiatric items suggests that the ME (definition) criteria selects individuals with less psychiatric co-morbidity and mental health issues than the ME/CFS (CCC criteria) group. Jason et al. 2012
Could the Canadian Consensus Criteria Miss Patients with Brain Disorders?
Since the CCC/ICC do surely delineate a more ME/CFS-like set there’s also the potential for more physiological findings but if Dr. Natelson’s work is correct these definitions could also select out a group with fewer neurological findings.
Should the community choose the known problems of the Fukuda definition or the possible consequences of the CCC?
Dr. Natelson’s work over the past 15 years suggests that ME/CFS patients without mood disorders have a specific type of brain disorder that patients with mood disorders do not have. Patients without mood disorders appear to have significantly more neurological impairments, functional impairments, reduced blood flows to the brain, lesions on the brain, etc. than patients with mood disorders. Since the CCC/ICC appears to select for patients with mood disorders it’s possible that they select against patients without mood disorders. In any case, the percentage of patients without mood disorders could drop dramatically and that could make spell hard times for researchers like Dr. Natelson who are looking for evidence of central nervous system damage in this disorder.
- See The Splitter: Researcher Asserts ‘Brain-damaged’ Subset Present in Chronic Fatigue Syndrome (ME/CFS)
Both the DePaul studies have flaws and it’s possible that further, more definitive studies will not find increased rates of mood disorders in CCC defined patients. On the other hand it’s possible that they will. The point is that we don’t know and do we want to take that chance?
The steady stream of psychiatric based ME/CFS studies from Europe and the UK suggests researchers would be eager to exploit any advantage that would allow them to define this disorder as a psychiatric one. The implementation of the new DSM-V criteria potentially opens the door more for psychiatric diagnoses as well. This is not a time to give psychologically oriented researchers more ammunition.
Transition?
The letter calls for the adoption of the CCC now with the idea of a transition to a better definition as it becomes available. on the face it that sounds reasonable but history does not suggest that the federal government is interested in transitions in this area. Despite the acknowledgement embedded in the Fukuda definition that it was an interim definition, but in the 20 years that definition (nobody seems to really like) has been in force, the federal government has not tinkered or even funded studies designed to transition to a new definition.
It would undoubtedly take a major effort – spread across multiple agencies, including the NIH/CDC, FDA, Social Securit, Medicare/Medicaid – to endorse and transition to a new definition. Since that kind of effort probably wouldn’t happen very often it would be much better to gather consensus and data and get it right the first time.
A good statistically based definition may not be that far away.
Not Far From the Right Definition
We’re actually not that far from a suitable definition that avoids the psychiatric disorder question. Jason found that an ME definition based on Ramsay’s criteria it picked out a more severely ill group of patients than the Fukuda definition without plucking out patients with increased rates of psychiatric illness. The difference – that definition required just four symptoms; sudden onset, post-exertional malaise, one neurocognitive symptom and one autonomic symptom. The sudden-onset requirement ruins the definition for me but this definition demonstrates you can narrow in on an ME/CFS group without requiring alot of symptoms.
Note that a definition with fewer symptoms does not dis-include people with psychiatric disorders; it simply ensures that people with fewer symptoms and presumably fewer psychiatric disorders also fit the definition.
The End of Consensus Definitions (?)
Diagnostic criteria should be based on statistical methods rather than consensus declarations. Ongoing discussions about which case definition to employ miss the point that the criteria did not pass appropriate external validation. Maes et al.
The Holmes, Fukuda, Oxford, Empirical, CCC, ICC….. in fact, all the definitions for ME/CFS produced thus far are consensus definitions put together by groups of people who think they know what ME/CFS looks like. It’s questionable whether consensus definitions are going to cut it anymore. My guess is that science is too data driven now for the federal government to put it’ stamp of approval on another consensus definition.. My guess is that attempting to push the federal government to insert something that radically redefines ME/CFS research efforts and other federal programs is going to require statistical evidence.
The best approach at this point might be to press the federal government to have the workshop on producing a new definition and provide a funding set aside for studies that statistically determine the best definition for ME/CFS. Lenny Jason has already done a good deal of work in this area and the feds have shown some interest. We may not be that far from a definition that everybody can support and which the federal government can take action on. I suggest that we wait for more studies from Jason and others before we endorse a definition at this point.
Immune system issues should be number 1 with cns exercise intolerance,inflamation. We have to go to Klimas, Peterson, Cheney and a few other top doctors with the sickist patients period. Do the testing on them. . This disease affects the brain and hormones ect. Trying to separate this opens a Pandoras box. Just stick to the biomarkers that can be measured by the sickest patients period . We can’t get off track now.We are making this more complicated than it needs to be. We can get this disease but we have to make sure we are on the same page or we all lose. I got cancer from this disease and I new it was coming. Your immune system is not functioning[over active, under performing and very low nk cells. Cmon guys lets get this right.
Yes, finding biomarkers and separating out the subsets would be the best and I imagine it’s only a matter of time. For me I would focus on exercise testing – that’s the most basic. most encompassing and dramatic result we could get.
I don’t understand why it would select for more people with mood disorders or otherwise assigned to a psychiatric classification. Maybe the psychiatric net is too wide–could that be part of the problem? Or are there some GENUINE psychiatric disorders which somehow fulfill our criteria. What would those be?
I don’t know either. I really don’t have a clue – all I know is that its a known possibility. Since two of the studies were Jason’s I assume that he did the diagnostic testing correctly. We might want to consider the worst case scenario – researchers in the UK casting as wide and perhaps as flimsy a net as possible – because that’s probably what they will do.
On the other hand I’m not afraid that some so-called ‘psychiatric disorders’ might fit within the ME/CFS rubric or that ME/CFS might at some point be allied in some ways with them. As Marco has shown, neuro-inflammatory conditions can causes all sorts of havoc..and I assume there will be overlaps.
Its also possible that Jason’s studies are overstating the degree of mood disorder present. His early studies were not the best fit for either of the definitions and he’s working on more studies. For now we have three studies that suggest using large numbers of symptoms to define ME/CFS could open a kind of Pandora’s box that we might not want to let open – or be able to easily get shut again…
I suggest we wait before we endorse either of those definitions.
Oh by the way I have the neurological disorders also including the white matter in the brain. The mood disorder is there also but it has nothing to do with the real physical symptoms based on real testing. We can’t afford to be abstract anymore if we are going to be taken seriously and get real treatments.
I agree with everything you said on the last two posts Cort. I did not tell you this before but I’m very thankful and lucky to have someone like yourself doing so much good for so many of us. I know it must be very difficult for you interpreting so many docs, researchers and people with illness on top of the fact your dealing with the disease yourself. Thanks very much pal.
Ditto!
IMHO the definitions I have read so far ( many ) from different sources ( NHS, Actio for ME, ME Association, etc), are good enough at this moment in time.
ONLY when biological marks are found and accepted for the ME/CFS diagnosis, a proper better definition can be discussed and agreed. Without a biological diagnosis, all suggested treatments have no concrete basis and that is why they do not work for everyone with the ME/CFS diagnosis by exclusion.
Moreover, ONLY when a biological mark or marks are found and accepted by all HCP, ME/CFS sufferers will be taken seriously, treated seriously, proper and professionally. Then it won’t be surprising if the psychological / psychiatric co – morbid conditions won’t be that more prevalent in ME/CFS sufferers than in other serious chronic debilitating conditions.
Biomarkers that break this disorder up may be closer than we think…..it may be that researchers just need more money to validate their findings. Natelson certainly he’s on the track – http://www.cortjohnson.org/blog/2013/06/10/the-splitter-researcher-asserts-brain-damaged-subset-present-in-chronic-fatigue-syndrome/ and I would be shocked if natural killer cells didn’t turn out to be a biomarker. The biomarker I’m looking forward to most eagerly would come from repeat test VO2 max results.
Hey, its possible this whole conversation regarding which symptom-based definition is best for ME/CFS will be moot after this disorders starts getting split apart.
Cort, I agree that most psychiatric illnesses could be ruled out with the second day stress test, I am tired of this stagnation, they have already screwed this up by giving us the CFS name which in reality is a symptom. Chronic fatigue is a symptom not an illness, we have a mutisystem failure, that once the source is fixed everything else will come back online. We cannot get caught up in anything that points towards psychiatric illness, we’ve been there done that. We have seen how trials tend toward psychiatric patients, because they tend to improve, this isn’t for us. Thanks Cort
I did not like the last question on the survey because while I want a new definition basically yesterday, which is what I put, it is more important that it be accurate. Otherwise why add more confusion into the mix as a ‘transition’… as if we don’t have enough confusion already. Also, there is no benefit for physical illness to be pushed into psychiatric diagnosis… we all know what problems, and deaths, that has caused. Nor do I like that it is as if we are putting symptoms to a vote… which ones are most beneficial… and playing with other chronically ill people’s lives, some of whom have ME-CFS and have gotten that difficult diagnosis… only to be then excluded because we voted for another definition? I know that’s taking it further than it is but it does concern me. Our symptoms are what they are. We only want doctors to look deep enough.
Well said Bethany… I had a bit of trouble with that last question – I knew something wasn’t right. Looking back I would have changed to fit your ideas.
I agree with your goal as well…Just dig deeper. We need a definition that will allow researchers to do that more easily. The CCC has the gift of ensuring that patients in the studies are as ME/CFS like as we can make them…its just that little twist at the end; that it could select for a certain type of ME/CFS patient that’s concerning…
Now, let’s keep in mind: the only thing that matters now is right treatment – via the right drug therapy. Let’s suppose ME is one illness characterized by a single universal, unknown immune-mediated biomarker. Then what we need is a criteria that selects ME-patients for drug trials that exclude non-ME-patients, period.
If ME is one illness, then CCC will work just fine. It definitively includes ME-patients, while excluding for sure people who doesn’t have it. Comorbidity with psychiatric illness is irrelevant, the right drug will treat the PENE, and thus the ME. Psychiatry will then do the rest.
Assuming that ME consists of two illnesses, but have different biomarkers (say one is neuro-degenerative presenting PEM and the other is immune-mediated, presenting PENE), well then Ramsay will select both, since CCC is a subset of Ramsay. Again, this poses a problem solely when doing drug trials: Rituxan or Ampligen won’t work unless the illness is immune-mediated. If both illnesses are immune-mediated, then there’s probably overlapping drugs that are efficient.
But again, why not use CCC? With the CCC we select the immune-mediated disease, so we get a relevant treatment group. And we exclude the group that won’t benefit from immune-modulation.
If there exists an ME that is of the molding suggested by dr. Natelson, well then include Ramsay patients, and exclude CCC-patients, and do trials on that select group.
I don’t understand. What specific symptoms from CCC are also seen in psychiatric illness?
Well we know PEM doesn’t show up – right? And since that is the core issue in ME/CFS then we can discard it as a mental illness. (Which is why I so want to get a big exercise study done.) But it just turns out that if a definition requires alot of symptoms more mood disorders start showing up. I can’t really say I understand this -nor can I say that its that well studied. Lenny pointed to two studies that suggested more symptoms tended to equal higher rates of mood disorders. Lenny’s done two studies as well but they have flaws.
This issue is not settled. However it does appear that a definition based on the Ramsey definition does not – based on one study – have these potential problems. What we need, I think, is a big study that can resolve this to everyone’s satisfaction…
I see a problem with the continual shuffling of the criteria because it may highlight more patients with co-morbid psychiatric conditions. It seems to me that the primary goal of the criteria should be the shed light on the typical defining presentation of ME/CFS. Unfortunately it seems that there IS a definite issue with co-morbid psychiatric conditions.
The psychiatric symptoms may not affect all patients, and there very well may be sub-types with and without psychiatric symptoms, but it is undeniable that this disorder has psychiatric symptoms for many, especially severe anxiety and brain hyperactivity (Wired but tired anybody?).
There are certainly many theoretical mechanisms through which these psychiatric symptoms can be caused by the same immune system dysfunction, infection and / or genetic factors as the other symptoms in the disease.
So to continually try and shuffle the criteria back and forth between those that may include psychiatric disorders and those that don’t is to continually alienate at least part of the patient community, and this will only get worse under the DSM-5 as even those without psychiatric disorders under DSM-4 will likely find themselves a home in a psychiatrists office if commonsense doesn’t prevail.
Currently the major problem isn’t whether ME/CFS has a psychiatric component, but whether it is the driving force of the disease or merely another symptom. This conundrum cannot be solved by making changes to the disease criteria over and over again.
Also, comparing the incidence of psychiatric disease in ME/CFS with other diseases that don’t have typically have psychiatric symptoms except those that may be situational is completely pointless.
I’m all on board with the anxiety like symptoms and hyperactivity/tired problem. Actually I looked up anxiety recently and I don’t have most of the symptoms but I do have this weird inability or rather difficulty in calming down.
I can only assume that that’s due to some underlying physiological problem and I think back to Dr. Bells story of the girl who’s panic attacks were due to blood volume problems.
I have had ME for a long time. It Is not CFS! Why do you keep pandering to this idea that they are the same! CFS is a made-up disease. Maybe the folks with post-viral syndrome could be put under this but ME is exactly what the name means – Myalgic (muscle pain) Encephalomyelitis (Brain and Spine Inflammation). There is a definite change in the brain and brain stem and a close connection with fibromyalgia and thyroid problems. There is nothing to do with psychiatric problems other than it can send one round the bend getting any medical help! There is a definite range of symptoms associated with the disease which are almost identical to MS. No one speaks of putting MS patients away! When we die the autopsies show the disease is down our spines. You don’t get that with CFS.
You may very well be right Alexandra..and Dr. Natelson may agree with you. He’s finding brain abnormalities in patients without mood disorders.
It is very sad to see that criteria still need to be discussed. I think objective markers can be found in the spinal fluid. At this moment HRV and NK-cel function can be used for markers.
We should be subgrouped soly based on objective blood/spinal fluid/double VO2 Max / Mri & SPECT scans / Nk cell function / Co – infections / active infections / exclusive tests like addison or lupus / neuro-cognitive tests / …
There’s enough basic testing available at the moment to be able to make some kind of distinction between patients and start dividing us up into à few different catagories that should be approached medically in à different way. This instead of lumping us together and ‘treating’ us all THE Same way.
THE criteria are mainly à good ‘starters point’ for gp’s but not more than that. THE step behind applying THE criteria should be THE real tests that are available. One by one together with excusion of certain illnesses to be sure the diagnosis is correct.
The problem is that we are still working on random definitions of a wastebasket diagnosis. Of course we can’t find a definition that screens all of us exactly – either it lets in too many people or keeps some of us out – because we do not all have the same thing. We have to stop working from the standpoint that what is termed “M.E./CFS” is all one illness, when we are really at least a decade past the knowledge that that is obviously not true. Sure, we want the power and fundraising potential of all working together, but we need to start working on separate definitions for separate disorders – it is the only way to have a more rigorous definition process, and to spur adequate treatments and the ability to discover actual causes. For some of us, this is clearly genetic, while for some of us it appears to be environmental. For some, it is primarily an immune disorder while for some it is adrenal, primarily GI, primarily mercury-related, etc. CFS is not a real thing, and although I like the term and narrowed definition better, ME is not a real thing either. It is just a ton of people being dumped into a name without any idea of what makes them different, and that is why different treatments work for different people. Now that we have gotten to a point of better research in the past 5 years, it is counter-productive to keep acting as if we all suffer from the same illness with the same symptoms – we don’t. It has been said that M.E. has at least 8 different subsets – let’s finally start to create and employ those definitions, so we can house all of our efforts under the same umbrella, but stop funneling people through the same general definition that can’t possibly work accurately for all of us. We cannot get any closer to determining the cause, or better treatments, or getting understanding and support from the outside medical community, if we cannot produce consistent results with ANY of our studies because the definition is so useless.
Let’s create several highly accurate sub-definitions, and work from there. Then it will be clear it is not primarily a psychiatric disorder, because we can prove that each subset comes with clear physical abnormalities and lab results: some people will have low NK count, some people will have test results that show post-exertional crash to the cells, some people will have marked response to anti-virals, some people will have marked response to GI treatment/anti-yeast/Sophora, some people will response to adrenal support, some will improve with Fibro treatment like LDN… of course there will be overlap, but every single patient who fits a subset will then have test results that prove that they are not simply suffering from an anxiety disorder or psychosomatic illness, that whatever they have it is provably something more than that. Then people who have acute onset can be treated as such, and those with gradual onset may end with a different subset diagnosis. Yes, treatment will tend to overlap since most of these are complex illnesses, but the treatment pathways will be much more obvious, there will be less wasted time and money throwing every single patient through the long list of possible treatments, and causes and cures will be far faster identified. Why is this not as obvious to everyone else as it is to me? Am I missing a reason why this is not obviously needed and the best answer – why in the world should we be presented with several absurd options that do not fit us and set back our cause when we now know far more than simply that we all fit one definition and one illness and one cause, and be told to pick one? I did not fill out the survey for this reason, none of the options were appropriate given our current knowledge of the disease. I don’t mind adopting a more rigorous definition in the meantime to help the world see that this is a very serious disease, but I do not want my vote to be misconstrued as a vote to use that definition beyond a year or two, because all of the main researchers for this illness should know better by now that this is certainly not where we’re going to end up. Am I really the only one who is tired of being lumped together with a ton of people who do not relate at all to my particular form of the disease, which appears to be much more severe than most other patients I encounter, and responds to none of the same things as them? I want them to be cured as much as I want a cure for myself, but it is very obvious we do not have the same cure ahead of us, because we do not have the same things wrong with our bodies. Why are we pretending that the symptoms that are common to us mean we all have the same cause and same treatment pathways? We do not all have the same exact illness!
Please get rid of this wastebasket diagnosis, I am so tired of running into new patients who tell me they just got diagnosed as having “CFS,” who are working, who are going out every day of the week and still generally functioning, who are suffering some kind of thyroid or adrenal problems but have no immune symptoms, whose onset, presentation, and apparent cause are worlds away from mine. We are both ill, but we do not have the same physical onset or treatment available to us. I have as much in common with some of these people as I have to an MS or AIDS or lymphoma patient – sure we have stuff in common, but I would not be very happy to go into a doctor’s office and have them randomly assign me any of those titles to what I have simply because we have a lot of similar symptoms. My doctors should care more about my well-being, my treatment, and my eventual cure for that to be good enough. Throw-away diagnoses are given to patients who are seen as throw-away people. And NONE of us deserve to be thrown away!
There, rant ended.
Nice rant!
Sub-definitions – agreed.
Let’s find those sub-definitions
Yay! I’m not qualified to come up with those – I’ll leave that to the top research doctors in the world working on this disease – but I would venture that people who fall into this diagnosis (especially the old “CFS” one) might fall into some of the following subsets or alternate medical issues:
*genetic immune deficiency/viral susceptibility
*thyroid disorder
*adrenal disorder
*mercury poisoning
*other environmental poisoning (including war chemicals for veterans, and perhaps toxic dump chemicals)
*meth lab poisoning, especially for apt. residents and buyers of foreclosed homes
*immune crash due to weakened system (trauma? environment?) and then viral overload of EBV, HHV6, CMV, Parvo, etc. – perhaps these are all related to the same question: why does the immune system get stuck in a perpetual viral cycle, and how to kickstart the body after it gets stuck in sick mode? [similar perhaps to how the body gets stuck on a pain cycle in Fibro after a physical trauma]
*GI disorder/Coxsackie/gut infection
*Fibromyalgia
*Lyme disease
*Etc.
I can name at least one person I know who has a “CFS” Dx for each of these likely causes/subsets. Of course, many people will fit into multiple categories, like any illness – you can have more than one sickness at a time, unfortunately! But I suspect that not only have all of these people received their symptoms from different causes, but for most the cures are going to be very different. I am not interested in all of us getting the same “treatments” for symptoms, which just costs excessive money and prolongs the illness – rather than masking symptoms, we need to be targeting the actual source, which even if our bodies have devolved over time to create similar syndromes of systemic damage, I believe are still very different for so many of us.
The question for each patient is NOT what symptoms do you have, but what is the PRIMARY infection/disease? Similarly, if you treat AIDS patients, it’s pretty useless to attack it by who has developed what kind of cancer. The issue is the disease that killed the immune system in the first place, treating a secondary cancer or other disease, while necessary, does not solve the problem for the patient population, nor really tie them together with a meaningful symptom set for their primary issue. Would it have been useful to define AIDS patients according to whether or not they had cancer, simply because it was a common symptom? Of course not, which is why I really dislike the current umbrella definition for “CFS” – it is taking us down the wrong track. Doing it by symptom, you could just as easily group AIDS patients under an umbrella cancer, rather than as an immune disease, simply because many eventually develop it. That would have put HIV/AIDS advancement decades behind (and of course it started out being viewed that way), because it would be housed under the wrong medical specialty. The point is not how many of us have secondary diseases and related symptoms in common (which is why the crux of ME/CFS does not come down to psychological disorders, even if many patients have them) – the point is what is the primary disease, that came first, and is essentially responsible for generating all the others.
In my case, it appears to genetic and immune in origin. Everything else came after – the Fibro, the hordes of viruses, the dysfunction of every part of my body. I had a susceptibility as other relatives/ancestors have had, I had a trauma, my system crashed and I got sick with an acute onset. I hate treating all my symptoms backwards, even though it is the only way because it is easier to treat lesser symptoms right now than the more serious ones, or any of the causes. It wastes years of my life and an insane amount of money, rather than getting right to the point of what is going wrong. Yes, I have in common with many other patients that we have cognitive symptoms, GI distress, poor vitamin absorption, exhaustion, pain, flu symptoms, weakness, etc. etc. – but since these issues do not come with labs tests, all are useless, they are associated with endless numbers of organ dysfunction, disease, emotional trouble, etc. I should not be diagnosed based on self-reporting nebulous symptoms, that’s why no one believes us that we’re sick, and would rather say we’re crazy. Creating definitions around the test results and narrow symptom sets (like something that could only be dysfunction of a specific organ or region of the brain, and could not possibly be something else) we CAN find, and then constantly adjusting and adding to these definitions as needed, should put us in the direction of finding actual cures, and more meaningful treatments, while lending validity to the cause of millions of patients.
I would love the doctors spearheading our illness(es) to address these points, rather than going around and around in the same useless circles with the FDA and NHI and CDC and everyone else who can’t help us by nature of their institutionality – they are set up to deal with lab results and concrete findings, and instead of arguing with them for not being sympathetic enough, we just need to give it to them. Better to identify and serve a small subset of patients, than not to serve anybody at all. Every small group helps to identify the next group, so it benefits all of us to have any proof at all that illness actually exists for any group that was once ignored.
Thanks for that very interesting comment. I think the symptom issue is why organizations that are trying to get to the bottom of ME/CFS by using molecular techniques like the OMI and that support scientifically redefining ME/CFS like Simmaron are the key…You can say what ME/CFS is by looking at symptoms – unless you can, like Marco did pull out some really unusual ones….
Of course the molecular investigations cost money and you need big studies…
Cort, the Canadians blasted the FM criteria. I had an article published comparing the two, the new ACR and their new treatment guidelines. Both are bent on ignoring what FM is not instead of what it is. Then Dr. Frederick Wolfe did a greater disservice and the Canadians followed his lead, by suggesting a study he did with a German, in Germany, for which they received pharmaceutical honorariums, as a polysymptomatic disorder (the same terminology in the new DSM-5)
The study was horribly flawed. Dr. Wolfe used his own “data base” instead of the ICD and used an unproven tool to prove their study hypotheses that FM is a psychosomatic disorder. The DSM-5 is killing the FM and CFS/ME community, and here is a link on what Huffington Post contributor has to say about the chronic pain population in general.
Don’t People in Chronic Pain Have Enough to Deal With?
http://www.huffingtonpost.com/allen-frances/dsm-5-chronic-pain_b_2916904.html
I am not for ANY diagnostics that do not suggest physical, objective criteria, that also includes assessment for comorbid disorders, period! And even then, we can all be accused of have a valid mental illness diagnosis (polysymtomatic disorder, PSD). The DSM-5 says you can have disorders with objective criteria and still be mentally ill.
When I get time, I will come back and give this article and petition the time it deserves.
The DSM is a guide to hordes of conditions, none of which require labs or other provable criteria – not for diagnosis, not for determination of treatment (type, amount, or duration), and not for determination of cure. This is not the most helpful reply to your post, but in regards to the last bit, I simply wanted to point out that we can’t waste all our time trying to avoid an organization that operates in such a manner. They are neither scientific, nor medical. If psychiatric diagnoses are going to continue to exist outside of the standardized medical community, without benefit or labs, scans, or any other evidence to support their work, nor any meaningful collaboration with any other medical doctors of the patient, there is little we can do to stop them. The only thing we can do is to make sure OUR disease has numbers to define it, so we can be treated by medical specialists who require rigorous objective criteria, if we choose to. If psychiatrists want to continue to insist that we are mentally ill, at least mainstream doctors who are better covered by insurance than psychiatrists are will have the classic symptomology, and accompanying test numbers, to look for in their disease databases to make an accurate diagnosis for our disease. We can’t fight everybody at the same time, better to focus on the battles that are worth it.
[I know that wasn’t the main point of your post, but picking and choosing battles seems to be a relevant issue for M.E. patients to conserve energy in general, and certainly to steer through all these political issues with research on our limited funding as well, so I thought I’d mention it. Nearly every single article on ME/CFS mentions that psychiatrists claim we’re crazy or have in the past, and I just think we need to stop devoting so much of our energy to that thought, which is very harmful to our morale. Let’s focus on what we CAN do, rather than on what we can’t.]
Anyway:
“I am not for ANY diagnostics that do not suggest physical, objective criteria, that also includes assessment for comorbid disorders, period!” – I completely agree!
I must say that I haven’t heard anything, even in the general news, about the DSM-V that’s positive…There seem to be many complaints about it in general. It’s amazing that no ‘mental disorders’ have biomarkers. That’s what I heard – I hope its not true- but then again it is hard to dig a biomarker out of the brain.
@Sunshine: Agreed about the picking our battles (imho, in addition to the “are we crazy or not” question, the CCC petition is also one occasion of not picking our battles well), as well as subgrouping/separating out what are clearly different diseases, especially as our symptoms are so non-specific aside from PEM/PENE (and even that hasn’t established itself as unique to this illness). Whenever I’ve fantasized about being able to ask the CDC one question and only one question (and I’ve done a lot fantasizing about this sort of this with all the time spent lying in bed ::grin::) it would be this: why have they not done the subgrouping that Fukuda very clearly called for? It’s been almost 20 years now. Fukuda was meant to be temporary. It recognized its weaknesses and noted that subgrouping was the next step. I only hope that they are finally doing that now with the multi-center study collecting so much data. If I had more strength, I’d do more than just hope (hard data, fwiw, is the battle we should be fighting, especially with regard to exercise testing).
To CCC or not to CCC is not really the question. The main reason mood disorders becomes an issue is with regard to the “are we crazy or not” question, which, as Sunshine points out, is a question of data. Moreover, people with bipolar disorder can get HIV or Multiple Sclerosis or Lupus or etc., so why would they not get ME/CFS? Yes, I appreciate separating them out for the purposes of establishing cohorts has its merits. But it may also miss a neuropsych component to an underlying organic illness. Combine that with increasing evidence for organic causes to “craziness” (depression/viral; schizophrenia/disease-process-I-can’t-remember-at-the-moment; etc.) and the whole question of separating us from the crazy Them becomes far messier.
Thanks, Celeste…
I looking forward to learn more about the diagnostic issues in Fibromyalgia…It seems that more and more evidence is pointing to issues in the nerves of muscles…Sometimes the pendulum swings too far in one direction…
I would like to see someone analyze what about the CCC is making it pick out more mood disorders than Fukuda. If the requirement for post-exertional collapse alone picks out more mood disorders than persons without post-exertional collapse who have been designated ME/CFS we have a major subject for research, and the research needs to be done.
I don’t see that we can properly designate a new definition until we have figured out the whys. However, that doesn’t mean that we have to pull what has been done in promulgating the necessity for a more realistic definition — the government isn’t exactly rushing to implement and meanwhile keeping the ball in the air fertilizes the field. Excuse the mixed metaphor.
We should get rid of every symptom requiring subjectivity, including the fatigue scales. We can measure loss of function with activometers and hard data on school attendance and hours worked, hours doing chores, and similar hard data describing activity.
It shouldn’t be PEM because the ME definition with 4 symptoms that requires PEM does not pick out people with more mood disorders..I imagine its simply the increased number of symptoms. I think that Katon and Russel ratcheted the numbers of symptoms up and as they increased the number of mood disorders increased…although that’s from memory.
My guess is nearly all or all ME/CFS (Canadian) or ME (ICC) patients in the studies are ordinary ME (or ME/CFS or whatever) patients rather some sort of odd psychiatric disorder.
I’ve just read Contrasting Case Definitions: The ME International Consensus Criteria vs. the Fukuda et al. CFS Criteria. Extract:
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“As is evident, the ME-ICC had significantly worse scores on 53 items, and most items were significant at the p<.01 level. For the majority of the items that were not significantly different and not included in the table, 31 items, the ME-ICC had directionally worse scores than the Fukuda et al. (1994) CFS group.
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Similarly, they had significantly worse scores on four subscales of the SF-36: Physical Functioning, Bodily Pain, Vitality and Social Functioning.
This symptom load and level of disability is a huge strain.
Having a sudden onset (a requirement for the other ME criteria) probably helps protect mental health. If one didn't notice oneself suddenly becoming ill, one is less likely to be "gentle with oneself" e.g. "beating oneself up", sad that things are inexplicably difficult. Similarly people around one may not be so considerate to people who didn't suddenly become ill.
Good points Tom; I never thought of sudden onset kind of inoculating one against those negative thoughts…Brilliant insight – thanks!