Discussion in 'Action Alerts and Advocacy' started by Bob, Feb 2, 2011.
I just can't seem to find a researcher interested. Have tried before.
Ah. That's a shame. I think this is a major problem. Establishment of clear cohorts of people with neurological and other multi-system abnormalities using more stringent criteria would progress biomedical research in lots of ways, yet it seems to be ignored even by 'biomedical' researchers. I was shocked at the failure to establish ME cohorts for the negative Groom et al paper too.
Ironically, the caveat about cohorts in Switzer et al (as illogical as it was) did point towards a major problem in CFS research. It should be taken up and run with- or at least discussed carefully. Yet the problem of CFS criteria sits there like a big elephant that most ME or CFS researchers sidestep around!
The problem is that it isn't this simple. It's not a matter of CCC with neuro-immune disease and everyone else without neuro-imune disease. Using Fukuda properly, we do find neuro-immune disease, and in a larger percentage than would be expected from only the CCC patients included in Fukuda. Dr. Nancy Klimas' NK cell profile for biological markers is, I think, developed in Fukuda-CFS. Fukuda-CFS and CCC-CFS do seem to be related (even though Fukuda-CFS lets other diseases slip in as well, even when used properly). Whether that's becasue they are the same, or just that they are similar, requires actual well-funded research and more biomarkers.
BTW, Oxford-"CFS" have biomarkers, too, just not ones that doctors typically check. MDD and bipolar disease, for example, have mitochondrial dysfunction (less severe than ours, but very real). Vitamin D deficiency can be found if you actually check. And so forth. All of these diseases are real and most of them are biomedical, it's just that it's stupid and unscientific to throw a bunch of univenstigated (or under-investigated) fatigue cases together and call it a disease. It even worse to call this group by the name of a different, established disease. That's outright fraudulent.
There are several key points that people are missing in this debate! Either through a lack of knowledge of them or an inability to understand the significance of them and it has been like this for decades. It is the lack of understanding of these issues that is the cause of all the failure of all the advocacy and research to achieve anything in the way of resolving these issues and finding cures and treatments for people.
The most vital point that everybody involved has to know is; There is a long held belief that as soon as there is a diagnostic test that can 100% accurately diagnose M.E then all these problems will be over! The point is that there is a 100% accurate diagnostic test for M.E and this has been known since the 1980s! This test is called the SPECT brain scan, this test always shows a unique pattern of damage to the central nervous system that is only ever found in patients with M.E! These results can also be verified further by the use of PET brain scans with appropriate software and or QEEG scans. This unique pattern of damage to the central nervous system in patients with M.E has also been observed numerous times at autopsy! Unfortunately knowledge of these facts is very limited leading to an endless chasing of tails trying to find something that was found long ago!
Myalgic Encephalomyelitis as defined by the WHO and recorded in numerous outbreaks such as Akureyri and Royal Free Hospital outbreaks is a very real disease, with a long history of scientific evidence and research behind it! But it is not chronic fatigue syndrome! In fact Fatigue is not even a principle symptom of it.
A Brief look at the history of chronic fatigue syndrome helps to clear up a lot of issues. Chronic fatigue syndrome is what its name implies a syndrome! It is not a disease. It was invented by the CDC in 1988, supposedly!!!! according to the original Holmes criteria in response to the fact that theyd found that viral tests for EBV, CMV, Herpes type 1and 2 and Measles are very inaccurate and that large numbers of healthy people had been getting failed results, and they claimed to be concerned that doctors were giving the then diagnosis of Chronic Epstein-Barr syndrome to these people when the test results might actually mean nothing and the patients symptoms may be caused by a missed major disease. And they propose that lumping all these different viral conditions under the banner of Chronic Fatigue syndrome was somehow going to help this situation????? They did however state that chronic fatigue syndrome should not be considered as a disease.
Anyone who knows anything about how medicine has always worked can immediately see that this piece of nonsense (the Holmes criteria link here http://www.ncf-net.org/patents/pdf/Holmes_Definition.pdf ) has nothing to do with medical science. The whole point of science is to break things down into their smallest components so it can be understood better, this criteria does the complete opposite of this and instead lumps all these different viral conditions together as one thing. The obvious solution to the problem would have been to call each condition by it real name chronic EBV, chronic CMV, Chronic Herpes type 1 etc, and inform the medical community that the tests where unreliable and to properly investigate their patients with fatigue conditions and these failed test results, so that major diseases where not missed.
If this piece of unscientific gibberish had not been written then chronic fatigue syndrome would not exist! M.E would of continued to have been seen as the WHO neurological disease that it is! And doctors would have continued to investigate patients that presented with Chronic fatigue for all the conditions that cause chronic fatigue e.g. cancer, lupus, adrenal insufficiency etc, etc until they found what was wrong with them just as had always been done in the past.
However those of you that are aware of the proven links between certain doctors and various insurance and political groups that stood to gain from the invention of a disease whos existence couldnt be medically proved and therefore could only ever logically be seen as a psychological illness, which meant that they immediately became ineligible for health insurance, the reasons for all of this start to become glaringly obvious!
The next stage in this farce was for certain groups to start saying that CFS and M.E are the same thing. It is interesting to note that the first person to come up with the name CFS/ME was a certain Psychiatrist by the name of Professor Simon Weasely!!! Because this blatant falsehood was taken as fact it immediately meant that people who actually had M.E immediately became ineligible for health insurance (how convenient).
Since the original Holmes criteria there have now been a total of nine different criteria written for chronic fatigue syndrome, each adding more and more different symptoms to the list that this disease that doesnt exist is supposed to have. But the unifying characteristic in all of them is the use of vague symptoms such as fatigue a condition that is found in almost all chronic illnesses. This has lead to a situation where vast numbers of people who dont have M.E but have other diseases ranging from simple vitamin deficiencies all the way to serious diseases such as Lupus, MS, Cancer and HIV are being misdiagnosed with CFS, Because it has now been excepted by the mainstream medical profession that CFS is a real disease, and they are handing out this diagnosis to anyone that they cant work out what is wrong with them, after only doing a handful of basic tests. In the mean time the reality of M.E and all the scientific evidence that proves it has been forgotten.
It is interesting to take a look at some of the figures behind this; estimates done a few years ago showed that only about 25% of people with either a CFS, M.E or CFIDS diagnosis actually had M.E. Now however because of the dramatic increase in doctors giving out CFS diagnosis it is estimated that only about 1 million of the estimated 20 million CFS diagnosed people actually have M.E. There are Doctors such as Hyde and Mirza who actually bother to investigate their patients properly who regularly find 80-90 percent misdiagnosis rates and even a recent NHS study found that 40% of people diagnosed with CFS were misdiagnosed; which ever set of figures you chose to believe these numbers are extremely disturbing!
When it comes to the Canadian consensus Criteria, although it is good that it brings back the name Myalgic Encephalomyelitis, it is what it says it is a ME/CFS criteria it mixes part of the symptoms attributed to CFS and part of some of the symptoms of M.E, which actually helps no one, and it is possible to diagnose large numbers of people who dont have M.E with M.E using this criteria because of this mistake! Yes because it has more serious symptoms then some of the other criteria it is less likely to diagnose people with psychological illnesses with M.E using this criteria, but the opposite is also true because of the inclusion of these more serious symptoms you are more likely to misdiagnose people with other more serious disease with M.E. Please take the time to read this review of it here which explains why it is not useful for diagnosing M.E http://www.hfme.org/canadianreview.htm#62990082
Because almost all the scientific research studies that have been done into this field since the 1988 have been based on people selected by using these flawed criteria, it has meant that there has often been very little chance of people who actually have M.E being in them, they have instead been done on mixed groups of people misdiagnosed with an assortment of different diseases. This is why all the information from these studies has always been contradictory, and never made any sense, or help anyone. Only by doing studies on people properly diagnosed by the use of SPECT scans will any headway ever be made.
There is however an answer to all these problems. There does exist a diagnostic criteria for M.E that demands the use of SPECT scans, that has all the information in it based only on the study of patients who actually have M.E and on all the research that has been done since the 1930s into true M.E. it is divided into two sections one that has the clinical features of M.E e.g. symptoms of M.E so a doctor can use this part to immediately recognise that they are dealing with a patient with M.E and another section that contains the tests that confirm a diagnosis of M.E it is called the Nightingale Definition.
Please read this carefully, but keep in mind that the key to diagnosing M.E is a failed SPECT scan; all the other symptoms such as POTS and failed tests e.g. thyroid are found in numerous conditions.
As stated earlier Advocacy for M.E and CFS despite a lot of good intentions and effort, has over the last thirty years because of a lack of knowledge and agreement over these key points largely achieved nothing in terms of getting treatment for people. In fact because of the failure to understand that M.E and CFS are not the same thing, the majority of advocacy has played directly into the hands of the likes of Weasely and the insurance companies who want everyone to believe that M.E and CFS is the same thing for their own benefit.
Weather people have M.E our have been misdiagnosed they are all in the same boat, suffering neglect from the medical community and getting no help to find treatment for their suffering. And everyone needs to be united in a common goal, unfortunately there is still as of yet no consensus on what it is people want to advocate.
I propose that the only logical course of action is that advocacy has to be based on Scientific 100% proven facts, based on the work of the doctors who actually know what M.E is such as Hyde, Ramsey and Dowsett. My proposal is that all advocacy needs to be directed towards.
1 The immediate reestablishment of Myalgic Encephalomyelitis amongst the medical community as the WHO classified disease that it is.
2 The immediate use of the nightingale definition for M.E by the medical profession throughout the world and the abandonment of all the other diagnostic criteria.
3 The immediate introduction of it being tested for by the use of SPECT, PET and QEEG etc scans that can diagnose it because of the unique pattern of Central Nervous System damage that M.E causes.
4 And that extensive research programs are started immediately into Myalgic Encephalomyelitis based on it only being done on people who are proven by the scans to have it. With the aim of getting causes, cures, treatment and prevention found as soon as possible!
5 The immediate abandonment of CFS as a disease category, and the reintroduction of extensive testing for all patients who present with Fatigue states to find the true cause of their condition, as was always done in the past before the invention of the bogus disease category Chronic Fatigue syndrome. Without having CFS as a diagnosis for doctors to hide their ineptitude and laziness behind, doctors will be forced to investigate their patient until a real diagnosis is found.
If these goals are achieved then everybody weather they have M.E or are misdiagnosed will benefit greatly from it. If however advocacy continues along the same lines it has for the last thirty years then everyone will still unfortunately be in the same position they are in another thirty years time!
I remember reading the Da Costa et al SPE(C)T study.
It found average differences.
There was no talk of certain values being good (i.e. having good sensitivity and specificity). One might find average differences with cortisol for example but it's not necessarily that useful for diagnosis. For people unfamiliar with statistics, another example might be height between genders - there is a clear average difference but if wanted to use it for a "diagnostic test for men" one would need to pick a very high height to avoid picking quite a few women (and at that stage, one would exclude a lot of men).
I haven't read the other studies I admit but I don't recall thresholds ever being mentioned that do this job (are good diagnostic tests for M.E.
If there are studies which give thresholds, I would be interested to know what they are.
I am not able to stay online long enough to read thru this whole thread rt now, but I want to say that I agree that this is incredibly important.......I am all for the candian criteria - it fits so much better and shows how serious this is....and it gives Drs a better idea of exactly what thigns to treat and possibly even how to prioritize.
...I actually carry it around in my purse and have shown it to various professionals and friends/family who actually seemed to want to know more (that might seem a little like I am overdoing it or something, but I have so many symptoms I never remember them all and people don't really w ant to hear about them all, and if I simply try to tell them it just doesn't get the message across - it winds up sounding like I am making it up bc there are so many, but when they see an actual documented list like that, then they don't dismiss it so quickly....and it has helped a lot with communicating with docs)
This is the purpose of Oxford, and doubtless some choose to use Fukuda in this manner as well, and no doubt some of the actual authors of Fukuda preferred to do this. However, as it was written and published, this is an incorrect use of Fukuda. The correct use of Fukuda is to exclude other causes, and to eventually find a better way to diagnose CFS with actual diagnostic tests, since they incorrectly rejected the idea that they were looking at cases of ME.
Fukuda et al. state (emphasis mine):
Of course, they made a lot of mistakes in Fukuda and it's a problematic criteria. But it's not meant to remain a medically unexplained disease. The fact that CDC continues to say the exact same things that Fukuda said is telling about how resistant to information they continue to be.
The Wessely school research cohorts are, yes. For standard clinical diseases. If you know what to check (and only then), you do find biomarkers in MDD and similar diseases (which is what a lot of these research cohorts have), but these are not the types of things they checked for. These are new developments in research and not something that would be a clinical standard. Also the research cohorts would miss rare diseases, and early cases and rare forms of standard diseases.
The clinical diagnosis Wessely school cohorts, on the other hand, are not well checked for anything, and if they are checked, are checked only for the most obvious expected diseases.
Hi Dolphin, the original Drs who did the research that found measurable CNS damage in M.E patients using SPECT scans where Drs Jay Goldstein and Isamael Mena during the 1980s, it’s online somewhere sorry to tired to search for it at the moment. Since the invention of CFS however almost all work on this subject has stopped.
However there has been one study going on for decades involving thousands of patients and this is the work of Dr Byron Hyde who uses SPECT scans on all his patients and he has consistently found this damage to the CNS only in patients with M.E and not in patients with CFS, he then intensively investigates the CFS patients and finds that up to 80% have been misdiagnosed and are suffering from other known diseases, he blames his failure to find the cause in the remaining 20% on his own limitations as a physician, not on them having some mysterious new disease.
If you want to read more on this subject a lot of articles by Dr Hyde and other doctors like Dowsett who know the difference between M.E and CFS and a lot of information on the invention of CFS, misdiagnosis etc, etc can be found here http://www.hfme.org/
All the best
In response to Erlwein et al's negative XMRV study, and Cleare and Wessely (and a third author)'s comments about their patient author, I wrote this. See the part from Fukuda in bold, and note the way Oxford and Fukuda both ALLOW selecting neurological disease sufferers OUT of their cohorts:
The most frustrating thing about Byron Hyde and his studies is that he has not had them published. If he had, then it would be a lot easier for his work to be placed in the scientific arena where those such as Wessely, White, Sharpe et al could not neatly sidestep it.
rlc's post about SPECT scans gives me the feeling of the opening of yet another Russian doll!...seems to be almost suggesting that even those with 'true ME' (CCC inc PEM) don't have 'real true ME' which also requires a positive SPECT scan...
And if all the subsequent work on SPECT has not been published, it's not surprising that no apparent progress has been made.
Dolphin, thanks much for your post comparing the issue with height and gender, a very nice simple explanation of the problem. In such a case it's always possible - and possibly may even turn out to be correct - for someone to say: "OK: that means that the patients over 6 feet tall are the ones with true ME, and the ones under 5ft tall aren't"...but that could easily be wrong also. Seems we have this same problem with every set of tests and every set of criteria. It also seems to me that the only logical way out of this is to collect a very large and broad dataset with measurements of all these different abnormalities, and perform some cluster analysis to tease out any 'subsets' or correlations that may exist - we need a big set of data correlating all this info rather than lots of separate small studies showing a statistical correlation on some specific measure amongst a group of patients whose categorisation is itself unclear in the first place!
It's like a circular argument; no matter how we approach it the research seems to beg the question: what are we studying in the first place? well we're not quite sure, that's exactly the question we're trying to answer...or perhaps the problem's better described (for computer-literate folks) as a 'bootstrap problem': still need to find some way to get started properly - and my answer to that problem would be a large and rich dataset of patients, and cluster analysis.
The Spect issue seems like an important discussion...but this thread is aimed at working towards a mature consensus regarding research and diagnostic criteria, in the hope of reaching a common understanding of the CCC (or CCC+) behind which we can all unite as a campaigning issue...so I'm wondering whether there's now a need to start pulling some of the various strands together to see where we stand now. Bob's had a couple of attempts at that earlier in the thread; both Bob and I are rather wiped out at the moment but I'll have a quick go at summarising some of the themes...
- Campaigning for the use of the CCC as research criteria doesn't seem to be controversial. (Maybe rlc would say that Spect scans need to be standard for research cohorts, but that's the only hint of dissent from this line expressed here so far - and btw, I think we do need to be as inclusive as we can, so I'm not at all saying we should disregard the point about Spect; we need to try to incorporate that somehow).
- There's more concern about the insistence on the CCC as diagnostic criteria though, for various reasons described well on this thread.
- Many of the concerns about using the CCC as diagnostic criteria seem to have been addressed quite well though, especially by the 'subtypes' mentioned in the round-table discussion of physicians.
- So perhaps we are also ready to begin to define a 'CCC+' type definition? Something which takes into account issues like the full patient history, relapse/remission, and anomalous or atypical forms of ME/CFS with the odd symptom missing or manifesting in an atypical form - and gives a well-defined place for those anomalies.
I don't know where this discussion is leading, but I know that it's Bob's hope and mine that we can come to something concrete at the end of this. I guess that might be some sort of document laying out a common set of principles on which everyone (or as near as possible everyone) is agreed - something that we can get behind and all campaign for together without disagreement over details; something that caters for those discrepancies in a way that everyone's happy with.
Very roughly, here's a sketch of how it looks to me at the moment:
- Demand the recognition and use of the CCC as research criteria;
- Call for a research focus on the development of physical tests backing up the relatively informal CCC criteria;
- Develop an enhanced description of "CCC+" which takes into account some of the variations (eg partial remissions, atypical forms), and classifies and describes subtypes of patients in a more appropriate way.
That's a very quick summary...the detailed discussions are still important and need to continue, but I just wanted to also retain some focus on what Bob's trying to work towards on this thread.
I think this is how medicine in general will be done in the future. But how long do we have to wait?
Re: the Goudsmit definition - does anyone have a link?
Hi Mark, what I’m saying is that the introduction of SPECT scans for M.E would mean that you would be able to very quickly diagnose who has M.E and who doesn’t and if the CFS disease Category was abandoned doctors wouldn’t be able to just dump the rest of the people who didn’t fail the SPECT scan in this category and instead would be forced to investigate them properly and find out which of the numerous diseases that get misdiagnosed as M.E they actually had. The beauty of using SPECT scans is that there is 100% proof of weather the patient does or does not have M.E. Yes it is a shame that more work has not been published on SPECT scans and M.E but the M.E community should be advocating that it gets done!
Of course there will be people who have been diagnosed using the CCC who will be proved to not have M.E the reason being that it is an inaccurate criteria written by people who do not understand that M.E and CFS are different things. Which is why I’m proposing that the nightingale definition should be used instead.
There is no such disease as ME/CFS this is as ridiculous as saying Cancer/lupus or Diabetes/leprosy. Probably the biggest mistake that is leading to so much confusion is the belief that PEM is exclusive to M.E, there is no truth in this whatsoever PEM, the same as Fatigue is found in numerous conditions and using PEM as proof that someone has M.E can only lead to people being misdiagnosed as I was. I have PEM and I have hemochromatosis, in fact I have almost every symptom named in the CCC. If you think about it logically if you went to a hospital ward that was filled with people with a assortment of chronic illness and then put them through physical and mental exertion does anybody actually believe that these people wouldn’t then experience post exertion malaise and or pain? PEM is one of the reasons why doctors prescribe bed rest for sick patients it’s that common! In my previous post I put a link to a review of the CCC which points out some of its short falls, I haven’t seen any comments on it so I’m left wondering if it’s being read, because it contain important information that I feel everybody needs to know I’ll copy it out and put it in a separate post.
Going on to the subject of why CFS should be abandoned as a disease category. As everybody knows CFS is a disease of exclusion and all the criteria have incomplete lists of diseases that should be excluded, but we all know the reality is that this doesn’t happen! And most people only get a small amount of testing done before they get diagnosed with CFS and once diagnosed with CFS it becomes very hard to get more testing done, because of the belief that people with CFS don’t fail test so therefore it is a waste of money.
Where it gets really interesting is when you realise just how incomplete these exclusion lists are! It may shock a lot of people to know that the number of medical conditions that can cause chronic fatigue is 297 link here http://en.diagnosispro.com/differen...ific-agent-chronic-fatigue/25271-154-170.html Now I think we can take it as read that no patient on the planet has ever managed to convince their doctors to run tests for all these conditions and there has never been a study done by the medical community where they have run test for all these conditions on someone diagnosed with CFS. So therefore there has never, ever been anyone who has had all the tests for all the conditions that causes chronic fatigue. Which means there has never been anybody who has had every possibility excluded. The only Logical and Scientific conclusion that anyone can come to, is that there is no evidence what so ever that CFS exists!
The other interesting thing about CFS is it is supposed to be medically unexplained which means nobody diagnosed with it can have any failed blood tests, if they do have a failed blood test it’s no longer medically unexplained, there problem is caused by one of the conditions that causes, say low iron.
I see your a moderator Mark and have noticed that there is working being done collating a lot of information by this web site, I recommend that you do this. Go through the posts on this forum and write down all the failed tests that people here have. A couple of hours going through laboratory testing section will reveal why this is important, there are people mentioning there failed tests in a lot of the other sections as well.
What you will soon find is the most staggering array of failed tests imaginable, which is somewhat strange for an illness where people don’t fail tests! If at the same time you also write down all the different symptoms that people here have, you will soon find that to qualify for a diagnosis of CFS you can fail almost every diagnostic test under the sun and have almost any symptom you want!
The only logical conclusion that anyone can come to when they gather this information is that this is not a CFS forum, it is a forum full of misdiagnosed people who the only thing they have in common is that their doctors are lazy and incompetent and can’t be bothered either looking up on the internet what these failed tests and symptoms mean or looking them up in the medical text books they have in their office.
The other baffling thing about CFS is that it happened in reverse to the process that every other disease on the planet has. By this I mean that every other disease has got it name because groups of people where found, who had a disease that was not the same as the other known illnesses and they were then studied and the illness was named.
CFS happened in reverse! Before 1988 there was no mystery about M.E and hadn’t been since the 1930s epidemics, it was well known that it was a disease with a short incubation period that caused measurable damage to the central nervous system which had been seen in autopsy, they had even inject blood from M.E suffers into monkeys and they had developed the same illness and one had died. There was still debate about the cause, but there was a lot of evidence that it was caused by members of the entro virus family. There were people with chronic Epstein Barr but there’s no mystery about that, they had chronic EBV. There simply weren’t millions of people with unexplained fatigue waiting round for someone to put a name on it!
Then the CDC invented Chronic Fatigue Syndrome and then all of a sudden millions of people suddenly started developing this illness! How odd! Are the members of the CDC who invented this disease psychic? Or is it just a strange coincidence that CFS gives doctors an excuse for not investigating patient who present with fatigue properly as they always had to in the past!
Sorry if yet again I’m raffling a few feathers by pointing these facts out, but if this mess is every going to end then the truth needs to be told, M.E is a very real but rare diseases, CFS is not a disease it’s a misdiagnosis, PEM is a common feature of a lot of illnesses, the CCC is not a good criteria for diagnosing M.E the nightingale definition is, a lot of people on this forum are misdiagnosed and their doctors are blatantly incompetent.
It is by accepting facts like these that I stopped believing in CFS and instead did everything I could to find out what was really causing my illness, it’s taken a long time and I have had to sack a lot of doctors and learn vast amounts of information on numerous diseases, but I got there in the end and as long as I don’t have permanent organ damage due to delayed diagnosis I will be able to get my life back.
All the best
Link to original article here http://www.hfme.org/canadianreview.htm#62990082
A review of the Canadian Consensus Criteria
These guidelines are problematic. In a nutshell, this is yet another redefinition of CFS that has had a small number of facts about neurological M.E. tacked onto it. Yes, it selects a more severely ill and less-likely-to-be-mentally-ill patient group than other CFS definitions, but just like these other CFS definitions, neither can it be said to select a 100% homogenous patient groups consisting solely of M.E. patients (or even any other distinct patient group). As with all other CFS definitions, it selects a mixed or heterogeneous patient group and of course studies involving heterogeneous patient groups define nothing and help nobody; especially not any of the various patient groups involved.
The problem with this definition is that it focuses on mere fatigue instead of the genuine symptomatology and pathology that separates M.E. so distinctly from many other illnesses which may merely share a few symptoms. It is entirely possible that patients with non-M.E. illnesses such as Lyme disease, Fibromyalgia, MCS and many others may again be subsumed under this vague and mostly fatigue or post exertional malaise based definition. Many illnesses present with fatigue, and what might be described as post exertional malaise and do worse with exercise. But in no way do these patients suffer the same symptomatology, pathology and disability as genuine M.E. patients, and they are NOT genuine M.E. patients. (For more information see: What is Myalgic Encephalomyelitis?)
So not only does this definition fail to select a 100% M.E. patient population, or anything like it, it is also entirely possible that research could be conducted using this definition which contains NO M.E. patients at all, which makes this definition a dangerous tool just waiting to be used against the best interests of patients and science by vested interest groups. It should not and can not be considered a definition of M.E. It is at best, an unscientific blend of M.E. and CFS unfortunately.
The treatment section is very weak, so much so as to be useless and even dangerous, as is the section describing the symptoms which supposedly define ME/CFS which are very different form those that define genuine M.E. The case definition also misrepresents the connection between ME/CFS and Fibromyalgia: which is nowhere as marked as stated. However, the research section is useful to some degree as is the three page section on how inappropriate CBT and GET are for M.E. patients, and the section which describes some of the tests which can be used to confirm the presence of the illness.
This paper has also given many Fibromyalgia, Lyme and other patient groups (and so on) the mistaken idea that they have M.E. when they do not, and the mistaken idea that these illnesses are the same as M.E. or can correctly be referred to as supposed subgroups of M.E., which is also incorrect. In other words, it confuses the issue of correct diagnosis for many patients, in the same way as each of the other CFS definitions. This is unacceptable. Patients deserve their best possible change for recovery and this must always start with a correct diagnosis if at all possible. A CFS or ME/CFS misdiagnosis helps nobody except the financial vested interest groups involved.
Again, along with some excellent features in these guidelines there are also many very problematic weak points. Along with every definition of the illness written since 1988 when the fatigue and CFS myth was created to obfuscate the true nature of the illness for political and financial gain these guidelines also unfortunately still use the medically inaccurate terminology of fatigue for example. Worse, this fatigue is repeatedly describes as being medically unexplained which of course does not relate to M.E. which isnt now and never was medically unexplained. M.E. is of course defined by acute onset and measurable CNS damage, not fatigue or malaise. This definition confuses the issue further, by both stating that ME/CFS is medically unexplained, and by also showing pages and pages of evidence which very clearly and compellingly do explain the basis of M.E. medically! The definition also unfortunately uses the confusing and misleading term ME/CFS which gives the false and harmful impression that M.E. and CFS are the same, etc. This is hardly helpful when the number one goal of advocacy is to make people aware of the fact that M.E.is NOT CFS.
Readers of this text should be aware that no part of this paper is not tainted by CFS propaganda in some way. For every myth about CFS or M.E. it busts, it offers support to another equally harmful myth. It also seems likely that the small amount of legitimate M.E. information in this paper will only give all the poor quality and misleading CFS information more weight and so confuse the issue further for most readers, which is very worrying. If you are new to this topic, it is recommended that you read the papers of Dr Hyde first, to first get a clear understanding of the basic scientific facts about M.E. before dealing with such a problematic ME/CFS paper as this one.
I've read through all that, including the nightingale definition, which I've not looked at in depth before (although I admit I only scanned through it this time also!). It's an interesting and convincing case that you make; I hope others on this thread will read it carefully. I would certainly accept at the very least this much, that "CFS" is so vague that it will include multiple undiagnosed conditions, as we've (allegedly) just seen with Emily Rantzen's celiac disease. At the same time, I do see sufficient similarities between all of these conditions - including even the Nightingale definition of ME - to say that they seem to me to at least belong in the same family, for which the best word would seem to be "neuro-immune diseases" - and as I scanned through the Nightingale definition I found a lot that rang bells with me, and indeed I wasn't able to definitively say 'this isn't me' - but most of it seems to be medical tests which I haven't had performed. Which is a very good thing: definitions based on objective medical tests surely have to be a good thing!
I agree that this is research that's clearly important and should be carried out. However: unless and until the research has been done I don't see how you can be so confident that SPECT scans are 100% proof of whether the patient has ME or not. Dolphin has made brief comment on the SPECT research which seems to raise legitimate doubts about that. It seems that at present we have only Dr Hyde's word for what you're claiming here; I'm sure you agree that more evidence would be a very good thing!
Once again the question begins: should it be used for research purposes, or for diagnostic purposes? From my scan of it, it looks like an even more unwieldy and impractical tool for physicians than the CCC. What I like about it is the emphasis on what is objectively measurable.
I'm not sure about this assertion. What I understand by "PEM" (not a brilliant term to describe the phenomenon) is abnormal response to exercise, and a significant worsening of symptoms following exercise. I would prefer "Post Exertional Relapse" or perhaps "Exercise Intolerance", and the phenomenon we're describing here doesn't seem to me to be something widespread in numerous conditions, like fatigue is - indeed it seems to be a phenomenon whose very existence is controversial. I'm aware of research into obesity and exercise in recent years, which has found - to great surprise - a small subgroup of the population who do not respond normally to exercise. I do wonder whether this is a related phenomenon. Anyway...my feeling is that what we talk about when we talk about PEM isn't just a widespread phenomenon accompanying illness, like fatigue, but something novel and apparently unusual to - at least - "CFS". The work of the Lights in terms of getting this phenomenon confirmed physiologically seems very important btw.
I'm unclear: are you saying you are somebody who was diagnosed with ME and fits the CCC but eventually discovered that your correct diagnosis is hemochromatosis? I think that's what you're saying, but not exactly sure I got it right...
I'm not sure that's the same thing. PEM to me is: feeling relatively OK, somewhat recovered, then attempting to exercise, and finding that however long one rests for, and however much the other symptoms stabilise, as soon as one begins to exercise again the symptoms return. So not the same as exercising when in a bedbound state. But admittedly it's the same as exercising when one's sick...
I quite agree. CFS is in practice a diagnosis that excludes one from further medical tests - I think that for many doctors it is in practice a way of saying "I have run out of money (and patience) to spend on figuring out what's wrong with you: I give up."
I can't even begin to disagree with that either: I have heard about loads of possible medical conditions I might have on here, that I have not been tested for, and the concept of a "diagnosis of exclusion" is fundamentally illogical, so yes: I agree. And there definitely will be many people under this diagnosis of CFS who have medically-understood conditions that haven't been correctly diagnosed.
I agree that the closer you get to the psych lobby interpretations, the closer you get to them saying that CFS is now supposed to be a definition of "psychosomatic" and if you have anything provably wrong with you medically, you can't have CFS by definition. That's a twisted definition of things though, in order to create an illogical category that just means "can't find the problem" - something more like CCC, or even Fukuda used well, isn't intended to be used as meaning "no failed tests, no neurological symptoms", and good CFS physicians are reporting finding patterns amongst their patients that don't fit any known medical conditions.
Are you kidding me??!! Do I come across as somebody who is short of work to do?...
Yes, there are a lot of people who report failing tests. I myself have many failed tests regarding sensitivities, abnormal vitamin levels etc...but none of them are accepted or agreed with by the medical authorities here, although given my experience I am 100% confident that they accurately describe aspects of my physical illness. But I'm not sure what that's supposed to imply, that many people report failed tests but nobody seems to know what that means...I don't see how it implies that those people can't have ME or can't have CFS...people with ME/CFS can have other things wrong too...
Well I don't see anything strange there, but I never did accept the premise that to have CFS you can't have failed any medical tests - that seems to be a psych lobby construction in order to define CFS as non-physical.
Again: doing that work of writing all those symptoms down is not going to happen I'm afraid! But on the plus side, I'm heavily involved in working on a project that will do essentially what you describe in vastly more detail...coming soon...and if you're right in what you say, this project should confirm it.
I agree that with a CFS test it seems you can have many failed tests and many different symptoms...but at the same time, what I do see and what our physicians seem to see, which is something quite clear to me and to most of us here I think, is a common pattern of the fundamental characteristics of the illness, which seems quite well described by the CCC and - to a lesser extent - by Fukuda.
Once again I find myself half-agreeing. I think there is probably a lot of what you describe: undiagnosed conditions and lazy doctors. At the same time, the problems don't seem to be easy to solve, to find that right diagnosis.
But my main response would be that by your own definitions, as you've set out, "CFS" means precisely what you describe: lots of undiagnosed conditions, in which case this IS a CFS forum, in your own terms, if it is indeed true that all the members here have medically well-known conditions that haven't been diagnosed.
I see it as an ME/CFS forum, because that's its name, and I know a lot of people who see the conditions as separate and sharply delineated find that mixture annoying, but my response would be that the terms "ME/CFS" or "CFS/ME" or "ME" or "CFS" are the labels we have been given (depending whether we're in the UK or the US), and this forum brings all those people together, based on how we have been labelled, and tries to work towards understanding together what's really going on. So if it is right that "ME/CFS" is a misleading mixed category of illness, then that's what we are currently stuck with, and our aim is just to get to the truth. In other words, we are called 'about mecfs' not as a statement that we necessarily believe that ME and CFS are the same thing, or that we all have the same illness, but because that covers the way we are categorised at present, and we are all looking to find out the truth about it all. If there really were a sharp and well-defined line between the conditions, as you claim, there wouldn't be a problem...
Don't know much about the history of ME and how it was understood/treated before 1988, but that period was a watershed for sure and something went horribly wrong around that time which has obscured all the issues ever since. So I don't know whether what you say is true, but it sounds quite extraordinary if ME really was that well-understood before 1988.
Well really I think that at least part of the reason why the definition got broadened in this way and millions of people turned up with CFS, is because the invention of CFS was at least partly a response to the fact that these types of illness are growing, rapidly, and were growing in prevalence prior to 1988, and indeed they are continuing to grow in prevalence. That's also true of autism, Multiple Sclerosis, immune disorders in general, and a whole host of other medical problems - they have all been growing in prevalence and particularly so since the 80s, and the graphs (if read carefully) all seem to follow the same curve. I take that as evidence of a spreading infection, an epidemic or indeed pandemic spread over decades, and it's part of the reason why XMRV makes so much sense to me as a theory that underlies all these conditions that are rising, as a long-term epidemic of a retrovirus that can provoke a variety of conditions.
So I'm not sure that in the olden days we would have all been properly diagnosed by doctors...sounds like a bit of a rosy view of the past to me.
Not at all, you're not ruffling my feathers and I hope not anybody else's.
Whether what you're saying qualifies as facts I'm not sure - I would need more evidence than you've provided to call your analysis factual - but I'm quite open to considering it might very well be true. But the above paragraph of yours is an excellent summary of your position, so I've bolded it.
It's great to hear that you got there in the end - though it sounds like you haven't quite got there yet; I hope you do.
But I don't see what you are saying as at all incompatible with what we do on this forum: we all have the opportunity to pick up clues from each other about potential misdiagnoses, and if we do have well-known but undiagnosed conditions, we have a good chance of discovering them here I think...I have a long list of things to check out with my GP, which I learned about from PR, and if it turns out that I have one of those then your theory will be proved right in my case at least...I think you're dead right that we shouldn't give up and accept the "CFS" diagnosis, but instead keep searching for the answers - it's draining, and disheartening, but none of us can ever say that we've exhausted every possibility for diagnosis or treatment, so it's right to try to press on in the hope of getting as much of our lives back as possible.
Thanks for a very thought-provoking post. If it did ruffle feathers, then that's too bad: you made a good and coherent case without causing offence, IMO, and I look forward to hearing what others have to say about it - even if it sets the cat back amongst the pigeons as far as uniting everyone behind the CCC is concerned!
Finally, you did suggest to me a very good idea somewhere in what you wrote, which is a study in which a number of people diagnosed with CFS are rigorously re-assessed with a whole battery of tests, to see how many of them you can find who have well-known and undiagnosed conditions - that would seem just about the best way to try to confirm your theory about CFS.
We don't: I'm not waiting, I'm working on it myself
There comes a point where, if the system is completely failing you, then even though it is totally the responsibility of other people to sort it out, and you are still forced to pay them even though they aren't serving you at all, your own self-interest means you have to try to just do it yourself. There are enough of us now, who have just enough functionality and skills and (to a much lesser extent) a bit of money, that we're able to give it a go, and the internet makes so much possible, and at the end of it all I won't care over-much if the results of our research don't constitute published science: if we figure out the truth this way, and are sufficiently free to apply that knowledge, then science can catch up in its own sweet time...
Mark, I admire those who can make a substantial difference to research, despite their disability.
But it is not easy to make a difference. Doing such data mining requires significant resources (to get the data) and knowledge. If you don't get substantial amounts of data then your results will be merely suggestive, rather than indicative. That is not to say it won't have any benefits, perhaps a stepping stone towards more serious research (but you'd need to contact researchers directly to get them interested in your hypothesis).
Secondly, your results will be ignored unless you publish. I personally would aim for an intermediate multidisciplinary journal like PLOS, but even a lesser journal will provide a lot more impact than publishing a book or on the web. I personally wouldn't bother doing serious research unless I had intentions of publishing.
To those who think CC are not useful and Hyde's (or whomever one's favourite is) is the right one:
Could you PLEASE get those authors to submit for publication urgently?????!!!!
Otherwise we're still chasing our tails while Oxford gets used again as a 'well-characterised' 'CFS/ME' cohort...
In the meantime, validation work has been done on the CC. Getting them used and comparing them against the likes of Oxford, Fukuda etc. will help progress research in the foreseeable future.
rlc- if you have time to do the extensive data mining you insist should be done - please do!
I'm not quite following all this through but in case you've not seen Mark. I've two published convincing documents - Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - "A Clinical Case Defination and Guidelines for Medical Practitioners" - Bruce M Carruthers & Marjorie van de Sande. This was brought over to one of the earlier Iime Conferences. And secondly Byron Hyde - "The Clinical and Scientific Basis of ME" published some time ago - I only have chapters 5 & 6 photocopied. He is as you know the Nightingale Foundation. Do let me know if these aid at all. Both documents are fairly succinct. Former available on Iime (probably you have) latter isn't though.
You can also try a Google Site Search
Separate names with a comma.