Do lots of ME/CFS patients falsely believe they have ME/CFS or are they simply misdiagnosed?

[alex3619]

Hi Alex


I don’t blame the individual doctor. I blame a climate that allows such irrational thoughts and beliefs to persist and flourish. Just want to make it clear - I'm referring to the doctor's irrational thoughts and beliefs, that led him to behave like such a jerk.

I also try to distinguish between blame and responsibility. He might not be to blame, but he is still responsible.

 

[kermit frogsquire]

Dear Professor Edwards,

Thank you for your comments, however, I still think there is a problem with your analysis which is still being overlooked.

1. You are absolutely right, indeed, many patients think they have other diagnoses (RA, Lupus, MS etc), but the big difference is that there are, in a lot of cases, objective signs to determine who has these diseases - swollen joints are difficult to fake. For example, it would be unthinkable for patients to set up groups supporting an aberrant illness belief in RA where no one in that group had any signs of the disease. I agree that there is an issue with misconception over the reliability of tests, but those sero-negative patients still have joint damage which is objective. The "meme" in this case is therefore the denial of actual disease - the learned behavior of doctors that the ESR and CRP are infallible - and I agree, that annoys me, too.

But compare the above situation with that of M.E. where those same "false believers" have absolutely no objective signs or checks to counter their belief. Add to that doctors who are only too willing to diagnose ME/CFS thus reinforcing the belief. Add to that patient groups who reinforce the false belief that M.E. can be anything and do anything - everyone has CFS - what you then get is not a diagnosis, but a club, a cultural phenomenon, a reinforcing behavior for self-belief, and that is why ME, unfortunately, has become meme-like.

M.E. has become a place where all those other false believers you speak of eventually end up - since you accept the issue of false believers, you must now see why so many patients with this diagnosis don't have it.

Logically the argument is true, but I appreciate a claim "I know" is not scientific. It is, however, my experience. I was very reluctant to believe it to start with but having seen scores of recoveries from behavioral intervention (and that includes false belief in the effectiveness of homeopathy, the lightning process, having mercury fillings removed etc) the only conclusion can be that this is a huge problem. When I say recoveries, I also want to stress that the magnitude of change is also an important feature, patients going from wheel chairs to running miles in a matter of seconds. How many of your severest RA or Lupus patients go from death's door to running miles after taking a sugar pill, or worse merely after declaring "Stop, I am not ill"?

Therefore, in this context, I don't think it correct to say that false believers of M.E. are true psychoses i.e. the medical meaning of organic brain disease. By virtue of the fact that talking therapies can effect massive change i.e. The Lightning Process, sugar pills etc - false belief is just that - a belief. Add to that support groups which in a cultural-like fashion promote symptoms and behavior, and that distinguished this phenomenon.

2. I fully agree with you that everyone needs to be treated with respect, and organic brain disease certainly is distinct from "a meme". However, even in serious organic brain disease such as Bipolar Disorder, those patients are at risk of being sidelined because of a growing fashion, especially from celebrity culture from claims to have what I can only describe as a "light" form of the illness - they are "a little bit bipolar." In that context some very serious organic brain disorders are slowly becoming transformed into "memes" to the detriment of very poorly patients. This is exactly what has already happened to patients labelled as having ME/CFS.

To a certain extent, notwithstanding my disagreement with the article, I am pleased the author of the BMJ paper highlighted this issue - because it certainly is an issue and a growing cultural problem, not just for ME, but for other conditions too.

The important thing is that researchers are aware of this problem, I am pleased that you said that they are. However, that statement contradicts both my experience with CFS clinicians, and also the reliance on symptom based questionnaires for diagnosis. Only recently a clinician involved in vital research was surprised from a patient that had no response to supplements (supplements that have no value beyond placebo I should mention) purely because they have seen them "work" in other cases. This is bordering on homeopathy where the practitioners become deluded that certain treatments work - I agree with you that talking therapies are hokum, but what are we doing for goodness sake?

3. I disagree that organically sick patients, lumped in with the diagnosis of M.E./CFS, want practitioners to listen. CBT and talking therapies have little value for organic illness, except to allay fear. Whilst that may be helpful for RA, Lupus or other conditions where something else can be done, the fear with a diagnosis of M.E./CFS comes from a realization that everyone is being mixed up together in a nonsense label. What I want is a different approach that will actually help.

4. As I said before, there certainly are biomarkers to be tested, and even if you look on here there are different subgroups of patients who have certain markers. There is one group with IgG subclass deficiencies, one group with high total IgG, one group with low ferritin, one group with high ferritin/Tsat%. One group without EBV antibodies, one group with high titres to herpes viruses. I could go on, but my conclusion is that these are probably not the same illness. M.E. has thus become a heterogeneous group which includes numerous hard to diagnose or atypical presentations of autoimmune, viral, or other organic diseases where those patients represent a minority and a majority of false believers, supported by doctors reinforcing the belief, mask any way forward.

Grouping patients together based on vague symptom questionnaires that also includes those with false belief (they have read the questionnaires) only serves to perpetuate the suffering.

5. Also, I just want to add that I think you would be surprised if you contacted some of the practitioners of the psychiatric school. In my experience, they often don't diagnose the patients with M.E./CFS who are being diagnosed by GPs and CFS specialists - perhaps it is those patients who need to be selected for research i.e ironically the very patients not diagnosed as ME/CFS by the UK specialist centres. GP's often know these patients as "atypical cases".

Research must proceed on the basis of common objective markers - that is the only way to break the hokum. I know that no common markers were found in the Norwegian study, however, rituximab works for a whole range of illnesses, therefore it is not logical to argue the reverse that subgroups of patients that do have biomarkers in common should not be selected. Without biomarkers, at some point or other, the majority of false believers will negate the positive results - if the psychiatric lobby really is as terrible as some on here would believe, they don't have to do anything to destroy the research but sit and wait while we negate it ourselves.

I only hope you can help!

 

[Valentijn]

But compare the above situation with that of M.E. where those same "false believers" have absolutely no objective signs or checks to counter their belief.

Why are you so determined to discount subjective symptoms? They may be quite useless as outcome measurements in research trials, but otherwise I think it's safe to assume that people are rational and sane in experiencing their own symptoms until proven otherwise. Obviously someone doesn't have a disease if they are missing objective symptoms which are mandatory to diagnose that disease, but that doesn't make any of their symptoms "false".

Add to that patient groups who reinforce the false belief that M.E. can be anything and do anything - everyone has CFS - what you then get is not a diagnosis, but a club, a cultural phenomenon, a reinforcing behavior for self-belief, and that is why ME, unfortunately, has become meme-like.

I don't know of any patient groups which do this. It certainly doesn't happen on Phoenix Rising. In fact, the only people who seem to persist in perpetuating such "false beliefs" are medical practitioners of the bioPSYCHO(social) group who equate simple chronic fatigue with ME/CFS. Patients who come here with a CFS diagnosis, but lacking ME/CFS symptoms, are usually informed pretty quickly, along with suggestions on directions for further testing to find a more accurate diagnosis.

I was very reluctant to believe it to start with but having seen scores of recoveries from behavioral intervention (and that includes false belief in the effectiveness of homeopathy, the lightning process, having mercury fillings removed etc) the only conclusion can be that this is a huge problem. When I say recoveries, I also want to stress that the magnitude of change is also an important feature, patients going from wheel chairs to running miles in a matter of seconds. How many of your severest RA or Lupus patients go from death's door to running miles after taking a sugar pill, or worse merely after declaring "Stop, I am not ill"?

You are assuming that all recovery stories are intended to be truthful by their authors. There is a powerful financial motivation in reporting the success of LP especially, which is also the treatment for which the claims of recovery tend to be the most outrageous. However, even in the fantastic world of LP I don't recall seeing any claims of someone going from wheelchair-bound to "running miles in a matter of seconds". It's probably pointless to ask, since you never substantiate your claims, but could you PLEASE provide a link to these claims?

And LP and CBT both center around denial of symptoms, which easily explains most other claims of improvement in these cases. People are taught that they aren't sick and that they need to stop believing they are sick in order to stop being sick. In the short term, this can be very effective, especially in a disease where we have the physical capacity to be more active in the short term, but then suffer severe consequences in the longer term. While this is a problem with false beliefs, those beliefs are deliberately propagated by the therapists, only work with susceptible patients, and involve the denial of symptoms, not the experience of symptoms.

However, even in serious organic brain disease such as Bipolar Disorder, those patients are at risk of being sidelined because of a growing fashion, especially from celebrity culture from claims to have what I can only describe as a "light" form of the illness - they are "a little bit bipolar."

That's casual, sloppy, and ignorant use of terminology by healthy people. It relates to labeling, not to experience of symptoms, especially biological ones. It has absolutely nothing to do with illness, and I have yet to see any such people on forums or elsewhere actually seriously talking about such a disease much less claiming to have it.

I also have yet to see anyone claim to be "a little bit MS" or a "a little bit cancer", or even "a little bit ME/CFS", though they will express ignorance in believing that ME/CFS is all about fatigue and that they have fatigue. But even then they are almost always using the "I have some fatigue too" to disprove that ME/CFS is a debilitating illness, not to claim that they have ME/CFS too.

However, that statement contradicts both my experience with CFS clinicians, and also the reliance on symptom based questionnaires for diagnosis.

This is a natural result of GP's being told that there are no abnormal lab results for ME/CFS patients, and being actively discouraged from most testing. It's rather ironic for certain people to complain about a diagnosis being made on subjective reports, when they're usually the same people 1) excluding symptoms with objective basis from the diagnostic criteria, 2) refusing to acknowledge objective test results, and 3) encouraging other practitioners to avoid looking for objective signs.

Only recently a clinician involved in vital research was surprised from a patient that had no response to supplements (supplements that have no value beyond placebo I should mention) purely because they have seen them "work" in other cases. This is bordering on homeopathy where the practitioners become deluded that certain treatments work - I agree with you that talking therapies are hokum, but what are we doing for goodness sake?

Link to the evidence please. Which supplements are you assuming were useless?

Research must proceed on the basis of common objective markers - that is the only way to break the hokum.

There is a common objective marker: the 2-day CPET which you consistently deny the validity of, without providing any basis for your denial. The extremely high prevalence of extremely unusual results in a CCC-defined cohort would suggest that patients diagnosed with that definition almost all have the same disease, and a biological one at that. It's not a "minority" with organic disease, it's a majority, and they have the same rather unique and completely objective pathology.

Moderator Note -- for more posts related to CPET see here.

 

[chipmunk1]

Therefore, in this context, I don't think it correct to say that false believers of M.E. are true psychoses i.e. the medical meaning of organic brain disease. By virtue of the fact that talking therapies can effect massive change i.e. The Lightning Process, sugar pills etc - false belief is just that - a belief. A

Actually to my best knowledge it has never been proven that they can affect massive change in the average ME sufferer. Even the pace trial with their questionable recovery criteria showed only 22% recovered using CBT and only 8% GET. That wasn't even compared to a placebo intervention. If you subtract the placebo effect from this: let's say 7% you have 1% "recovered" using GET and 15% (one in six) "recovered" with CBT.

However mostly subjective criteria for recovery were used. It's never been proven that people really were more active. Since CBT mostly works on changing peoples perception you have only proven that:

1. GET recovers almost no one.
2. CBT can (at least temporarily) change perception in one of six people so that they can meet some rather sloppy recovery criteria without necessarily improving activity levels.

sugar pills

A lot of sufferers try various nutritional supplements, homeopathy. Of course these can be placebos and of course ME sufferers can experience placebo effects like the rest of the world does. Despite that you almost never hear people being cured by such interventions.

Where are the masses of people here on this forum that were cured by sugar pills?

Research must proceed on the basis of common objective markers - that is the only way to break the hokum.

What common objective marker do you have for diagnosing false beliefs?

 

[A.B.]

If an illness has a relapsing and remitting course, you'll probably see a lot of "recovery" stories that end up with a relapse some months later. It doesn't mean that these patients are delusional. They are just misinterpreting the situation, and wishful thinking exaggerates the improvement in health.

 

[Undisclosed]

To allude to ME as a meme is insulting.

Maybe asserting that the majority of ME patients have 'false beliefs' is a false belief.

 

[alex3619]

Let me reiterate again, only one in ten with post viral fatigue have ME. That nine in ten recover. That one in ten with ME do not. If doctors do not separate the two, the picture is totally skewed. Do any of those nine in ten have imagined illness? I think the immunologists do not think so.

In case anyone missed it, which I hope they didn't my new sig line is: A psychosomatic disorder is simply the belief that someone has a psychosomatic disorder. It is failure to diagnose. If there are any papers that prove the existence of any psychosomatic disorder, NAME ONE!?

 

[Firestormm]

Let me reiterate again, only one in ten with post viral fatigue have ME. That nine in ten recover. That one in ten with ME do not. If doctors do not separate the two, the picture is totally skewed. Do any of those nine in ten have imagined illness? I think the immunologists do not think so.

Where do those stats come from? I am not familiar with them. Thanks.

In case anyone missed it, which I hope they didn't my new sig line is: A psychosomatic disorder is simply the belief that someone has a psychosomatic disorder. It is failure to diagnose. If there are any papers that prove the existence of any psychosomatic disorder, NAME ONE!?

However, the term psychosomatic disorder is mainly used to mean ... "a physical disease that is thought to be caused, or made worse, by mental factors".
http://www.patient.co.uk/health/psychosomatic-disorders

For instance, while peptic ulcer was once thought of as being purely caused by stress, later research revealed that Helicobacter pylori caused 80% of ulcers. However 4 out of 5 people colonised with Helicobacter pylori do not develop ulcers, and an expert panel convened by the Academy of Behavioral Medicine Research concluded that ulcers are not merely an infectious disease and that mental factors do play a significant role. One likelihood is that stress diverts energy away from the immune system, thereby stress promotes Helicobacter pylori infection in the body.[6]
...
However, while it is necessary to identify if an illness has a physical basis, it is recognized more and more that the effort to identify disorders as purely physical or mixed psychosomatic is increasingly obsolete as almost all physical illness have mental factors that determine their onset, presentation, maintenance, susceptibility to treatment, and resolution.[8][9]
http://en.wikipedia.org/wiki/Psychosomatic_medicine#cite_note-medmag-6

 

[alex3619]

Where do those stats come from? I am not familiar with them. Thanks.

The Dubbo studies for one (two, actually, I think). SARS research. Q fever research. Around one in ten (though it varies from 8% to 12% depending on the study) with post viral fatigue go on to get ME or an ME-like syndrome or at least a qualitatively different chronic state. So nine in ten, roughly, do not. Post viral (actually post pathogen) fatigue patients in these illnesses go on to full recovery, often in six months, most in a a year, and very rarely up to five years.

This is old research, and one of the reasons, I suspect, we have to wait six months to attempt to diagnose CFS. That is because post viral fatigue is very very common. It is what doctors know well. That is why I think doctors find ME baffling. Everyone gets fatigue with a severe infection. Some recover in a month or two, but something like mono or Ross River fever can take a few months to years. Indeed I can get post viral fatigue on top of ME. I still recover from the post viral fatigue, though it tends to take months.

I used to live on a creek on the Ross River. I had an aunt who took years to recover from the virus. Funnily I have never been tested for it.

PS One. Most substantive pathogens cause fatigue. In most this goes away as the infection goes away. Post pathogen fatigue occurs when the pathogen is cleared but the fatigue remains. Its thought to be due to continued activity in the immune system.

PS Two. On psychosomatic illness contributing to disease, rather than causing it. My objections are primarily about causation, but there are issues with contribution too. Thoughts can indeed exacerbate illness, especially behaviours. However this is true even of a broken bone ... its a trivial view of psychosomatic, and harks back to the original mid nineteenth century view. The key thing though is that, like stress, its an exacerbating factor. Its not causal. There is currently no substantive evidence of psychosomatic processes causing disease, in whole or in part.

 

[RustyJ]

The Dubbo studies for one (two, actually, I think). SARS research. Q fever research. Around one in ten (though it varies from 8% to 12% depending on the study) with post viral fatigue go on to get ME or an ME-like syndrome or at least a qualitatively different chronic state. So nine in ten, roughly, do not. Post viral (actually post pathogen) fatigue patients in these illnesses go on to full recovery, often in six months, most in a a year, and very rarely up to five years.

This is old research, and one of the reasons, I suspect, we have to wait six months to attempt to diagnose CFS. That is because post viral fatigue is very very common. It is what doctors know well. That is why I think doctors find ME baffling. Everyone gets fatigue with a severe infection. Some recover in a month or two, but something like mono or Ross River fever can take a few months to years. Indeed I can get post viral fatigue on top of ME. I still recover from the post viral fatigue, though it tends to take months.

I used to live on a creek on the Ross River. I had an aunt who took years to recover from the virus. Funnily I have never been tested for it.

I am not happy with many points of this post. For a start the symptoms of chronic Ross River can fit the ICC and the CCC definitions for me/cfs and it has been proposed as a manifestation of me/cfs. So it would be problematic to define it as a separate entity from ME.

In my experience Post Viral Fatigue is not regarded seriously and is not widely accepted. Post viral fatigue is also a syndrome, since it is defined by symptoms only, the mechanisms poorly understood. It seems to suffer also from poor definition as much as chronic fatigue syndrome does. In both cases there is an over emphasis on fatigue. If post viral fatigue also includes PEM, sore joints, cognitive problems then how is it different from ME?

And before anyone takes me up on the point of PEM and CPET. As far as I know PEM is not limited to ME syndrome. It is just that in many biological illnesses there has not been a need to focus on it, as much as there has with ME (because of a lack of other perceived biological markers currently observed in ME).

If defined according to ICC or CCC the only difference between current definitions of PVF and ME appears to be the time limit. The six months period for post viral fatigue is very arbitrary.

The large Lipkin study noted that around the four year mark those with ME change their immunological signature. This four year mark is a tipping point. Prior to that point there appears to be a greater chance of recovery. But Lipkin was adamant that the pre and post four year syndromes were the same syndromes as defined by their selection process.

Of course ME is only a syndrome. It is defined by a broad range of symptoms, not a single causal agent. However much we may wish it to be otherwise, there is no reason why several diseases cannot exhibit many of the same symptoms yet still fit under the label ME.

To stand on the proposition that ME is a single disease cannot at present be substantiated, until a single causal agent is found.

I think too many of the posters in this thread have got enmeshed in trying to define the biological parameters of our illness. This is part of a divide and conquer tactic used by those wishing to promote psychobabble theories. Somehow the argument being if we cant define the biological parameters accurately this then means they magically don't exist.

A classic example of this is the ease with which neurologists dismiss scans showing profound hypoperfusion because it does not point to a single cause. Physical evidence is made to go away.

In a debate about psychogenic versus biological it is largely irrelevant and confounding to argue about the differences between ME, CFS or PVF. In fact the poor results from the behavioral studies which may have included large numbers of patients with idiopathic fatigue seem to bear out this point. Those GET and CBT studies provided poor results right across the board, even if a large number of patients had just idiopathic fatigue.

As for LP, well I seriously doubt the validity of anything coming out of that area for the reasons well documented throughout this forum..

In my experience, everyone argues from self interest. For patients it is about finding help for their illness. For those on the other side of the fence it is usually about financial or professional self interest (with exceptions of course).

If a poster appears to be very cosy with LP practitioners and is promoting LP, then it is fair to say their views may be compromised. LP is a business. Their objective is to make money, not cure patients. Some of their practices have been shown to be unethical.

 

[alex3619]

My understanding of the Lipkin finding is that its about the three year mark that things change, is there a link to him saying four years? It will be very interesting to see how this research develops. In any case there will be a paper eventually. I actually take this as a sign of the opposite position. Something is different with this subgroup of patients. What that is we don't fully understand yet.

There is a minimum of one crucial difference between most with post viral fatigue and those who get ME. Those with the most severe post viral fatigue seem to get ME. Post viral fatigue generally does not have the full range of symptoms of ME so far as I am aware. I am however unhappy with much of the research in this area. Its all grey, not definitive. My observation that most with post viral fatigue recover is still sound though. If we conflate post viral fatigue with ME, we are saying that most with ME recover.

At a recent conference (IACFSME?) it was revealed there was bloodwork that predicted very early on who with post viral fatigue would go on to get ME. So far this is a research tool, and they did not say what the test was so far as I am aware.

It is also the case that some cases of prolonged post viral fatigue from mono may not be ME. I have no idea what this does to the percentages. So they may fit Fukuda or other CFS diagnoses, but do they fulfil ICC or CCC or even Ramsay?

I have wanted a proper follow-up to the Dubbo studies for a long time, with serious assays of everything related to ME, or might be related to ME. So far its just a wish, nobody is coming forward with research or interest to do this. There have to be reasons why some with post pathogen problems recover, and some do not. We have also seen this with polio, and I think its fair to say probably with Lyme too. Now giardia is revealed as a possible cause. I probably had that once.

I also do not trust the motives of LP promoters. I even more distrust their education in this area. If you are operating from a highly biased and distorted perspective, then even with the best intentions the result may still be highly biased.

 

[chipmunk1]

The key thing though is that, like stress, its an exacerbating factor. Its not causal. There is currently no substantive evidence of psychosomatic processes causing disease, in whole or in part.

Stress is like sleep or lack of thereof. Almost everyone feels worse when sleep deprived. Poor sleeping habits do lower the quality of life of sick and healthy people. I am sure you can change the subjective sense of well being of cancer patients by changing their sleeping schedule. In some cases where poor sleep is an issue cancer patient might even feel better if sleep improves.but no one claims that cancer is caused by poor sleep hygiene.

Many or most people sick or healthy feel better when doing some relaxation exercises. It is helpful but it is not a real treatment. It's not curative.

In the psychobabble world just a response to a very unspecific treatment that could lead to positive responses in both sick and healthy people is considered proof of a mental disorder.

 

[kermit frogsquire]

Why are you so determined to discount subjective symptoms? They may be quite useless as outcome measurements in research trials, but otherwise I think it's safe to assume that people are rational and sane in experiencing their own symptoms until proven otherwise. Obviously someone doesn't have a disease if they are missing objective symptoms which are mandatory to diagnose that disease, but that doesn't make any of their symptoms "false".

You are assuming that all recovery stories are intended to be truthful by their authors. There is a powerful financial motivation in reporting the success of LP especially, which is also the treatment for which the claims of recovery tend to be the most outrageous.

Your comments are interesting, @Valentijn, but it should be obvious why subjective symptoms are so problematic in a diagnosis where specialists, including the authors of the CCC, accept that a large number of patients have false beliefs. If I could reverse the question, why are you so against the use of objective markers to define a subgroup for the purpose of research? Don't you want clarity? Do you prefer the current situation where research is wasted?

Regarding the recovery stories from the LP, I have seen many of them first hand and have absolutely no reason to doubt the validity. I do have reason to doubt the validity of the patients' original diagnoses, however, which I have no doubt were false illness beliefs. Whist we must be sympathetic to such patients, we need to do something to address this huge issue. (Incidentally I know the person who put a stop to the LP advertising and helped in some way.)

Again, this comes back to one problem - ME is a heterogeneous mess, it is a label under which thousands of people with a multitude of different illnesses, organic and psychological, are suffering and they are suffering because the questionnaires used to diagnose people are never going define a group.

 

[A.B.]

Your comments are interesting, @Valentijn, but it should be obvious why subjective symptoms are so problematic in a diagnosis where specialists, including the authors of the CCC, accept that a large number of patients have false beliefs.

Can you substantiate this?

If I could reverse the question, why are you so against the use of objective markers to define a subgroup for the purpose of research? Don't you want clarity? Do you prefer the current situation where research is wasted?

You seem extremely confused.

 

[A.B.]

There are people who want CFS/ME to be this or that, organic, psychological ... yet is it nothing but an artifical construct that is causing torture? Torture from psychiatrists (who inclidentally actually often refuse to diagnose the organically ill as having ME) and torture from "ME specialists" who diagnose everyone with it. Which is worse?

Wait a moment. You have no idea who diagnosed this person with CFS. Your imagination seems to run wild.

Besides, I think we all know better than to generalize from a single case. No doubt that there are many misdiagnoses. That's just what happens with illnesses that lack clear diagnostic tests. That includes all psychiatric illnesses - how many misdiagnoses are made in this area? I find it interesting that you seem concerned about ME/CFS misdiagnoses, while being unconcerned about psychiatric misdiagnoses.

The solution to lack of clarity is to fund the science that will bring clarity, not to make compromises with unscientific proponents of psychogenic illness. Arguably, this sort of compromise played a large part in creating this mess in the first place.

 

[Valentijn]

If I could reverse the question, why are you so against the use of objective markers to define a subgroup for the purpose of research? Don't you want clarity? Do you prefer the current situation where research is wasted?

I thought I've been clear on the matter, but to reiterate, I'm very much in favor of using objective markers, especially since they actually exist for ME/CFS. But even without objective proof, I see no reason to assume that anyone is imagining their subjective symptoms.

I do have reason to doubt the validity of the patients' original diagnoses, however, which I have no doubt were false illness beliefs.

How could you be so certain that they have "false illness beliefs"? Even if they do not have ME/CFS, and were misdiagnosed due to the poor criteria present in England, that does not invalidate their symptoms. There are many acknowledged causes of biological fatigue and pain which could be ignored more successfully than they can be in ME patients. Surely some of those patients could more convincingly engage in activity, while still experiencing that biological fatigue and pain.

 

[Bob]

There are people who want CFS/ME to be this or that, organic, psychological ... yet is it nothing but an artifical construct that is causing torture? Torture from psychiatrists (who inclidentally actually often refuse to diagnose the organically ill as having ME) and torture from "ME specialists" who diagnose everyone with it. Which is worse?

I agree that the 'CFS' definition is a problem.
Fukuda is an exceptionally loose definition, and defines little more than chronic fatigue.
(Or in the case of the Oxford CFS criteria, it diagnoses only chronic fatigue.)
Many different types of patients fit into the category of 'CFS'.

So, yes, it is the case the CFS is probably highly heterogeneous, and the loose way that doctors tend to use the diagnosis leads to further heterogeneity because of misdiagnosis.

But the biggest problem is not the diagnosis itself, but the vested interests.

If the psychiatrist lobby stopped claiming that CFS is a functional disorder, or a 'meme', then there would be very little conflict within the field of ME/CFS.
It's only the psychiatric lobby who are causing the problems, as part of a strategic power-grab.
And unfortunately they have unwitting, but very willing, accomplices, such as various governments (and in the UK: NICE and the NHS.)
All the evidence suggests that CFS does not fit the model of illness that the psychiatrists propagate.
e.g. The PACE trial demonstrated exceptionally clearly that physical disability in CFS does not respond to CBT.

Researchers should be working towards defining subsets of CFS.
This would be good science.

But have you noticed that the psychiatrists rarely attempt to narrow down cohorts?
There is no honest attempt by the psychiatric lobby in the UK to do proper science.
Instead, based on the lack of response to CBT in the PACE trial for objective measures, CBT is rolled out across the UK, and CFS is labelled as a functional illness.

No attempt was made in the PACE trial to look at any objective measures. They just aren't interested in finding out more about the disease/s and they aren't interested in accurate categorisation, and they aren't interested in defining subsets.

The psychiatric lobby will not have an honest conversation about the issues.
They are intent on continuing with their lucrative power-grab.

So it's not possible to have a conversation about the nature of ME, because the psychiatric lobby simply don't want one.

What we need is proper honest science that attempts to define subsets.

I think most patients would be happy if CFS was researched with honest intent, whatever the nature of the research (e.g. biomedical/psychiatric/functional).
The problem we have is that the psychiatric lobby have done an excellent power-grab, fitting all CFS patients into their hypothetical model/s of illness, despite a lack of evidence, thus harming wider ME/CFS patient community. And they don't intend to give up any of their power.

So, in a nutshell, the conflict within the field of ME/CFS is not about the nature of ME or CFS, but it's about honest vs dishonest propagation and implementation of science.

Researchers who are interested in biomedical models of illness don't purposely widen cohorts to muddle results. Instead, they do proper science which attempts to find out more about the disease/s, and they attempt to define subsets.

 

[Jonathan Edwards]

Dear Kermit,
Thank you for your further comments. I appreciate your intentions but I am not sure what solution you are offering that would be consistent with your own requirements. Other comments I might have made have already been made by others.

 

[chipmunk1]

I do have reason to doubt the validity of the patients' original diagnoses, however, which I have no doubt were false illness beliefs.

In medicine it is called "Misdiagnosis" yet you keep using the term "false illness belief" words that are very similiar to what the psychobabblers like to use and suggests being associated with delusional beliefs or thinking?

Why?

Which leads to the question why a patient with a misdiagnosis of Lupus is just having the wrong diagnosis while someone with a misdiagnosis of CFS/ME has "false illness beliefs" ?

 

[kermit frogsquire]

Dear Kermit,
Thank you for your further comments. I appreciate your intentions but I am not sure what solution you are offering that would be consistent with your own requirements. Other comments I might have made have already been made by others.

Dear Professor Edwards,

The solution is that all research must select cohorts using objective biomarkers or tests - these markers must be defined prior to the selection process.

As I explained before, whilst there is no single consistent biomarker for everyone (quite obviously because CFS/ME is heterogeneous) there are plenty of objective markers which small subgroups of patients have in common - ferritin, Ts%, IgG's both low and high, lymphocytosis, eosinophilia, tryptase, neutropenia, low angiotensin converting enzyme, TNF-a or other cytokines, liver enzymes, bilirubin ... the list is longer.

Whilst the Norwegian study failed to demonstrate a consistent biomarker (not that they measured all of the above - ferritin, Ts%, tryptase - and also quite obviously because of their heterogeneous patient population) it is not logical to make the assumption that therefore we should not use biomarkers.

A biomarker is required for one overriding reason:

1)To make sure that research proceeds on a similar group of patients, both for clarity and to prevent others from replicating the study with completely different patient populations. Unless you are suggesting, we should give patients who would recover from the Lightning Process and shouting "STOP" a drug like Rituximab? The symptom questionnaires, CCC or otherwise, do not exclude these patients.

Having acknowledged the problem of misdiagnosis/false beliefs and the failure of any symptom based questionnaire to correct it, should we should ignore that and blindly give anyone with this diagnosis Rituximab? Is that even conscionable?

Should we dose a heterogeneous group of patients, many if not most of whom are mentally ill (and would make recoveries simply by saying "Stop, I no longer have ME), in the hope of getting data from a minority of organically sick?

The first negative study in such circumstances will drive a nail so large into Rituximab as a possible treatment that this research will be buried forever.

Look, we already know the problem - for example, one study is done and finds elevated TNF-a in patients, another study (Lipkin) finds low TNF-a. (Lipkin selected out any patient with objective signs so it is no wonder he failed to find any viruses.) Nobody is studying the same group of patients! To argue that we should proceed in the same vein, in my view, is the very reason the torture of M.E. patients continues.

The Norwegians will find Rituximab works in one double blind study, then in another study they will find it doesn't. Montoya has already faced this problem with Valganciclovir, others have faced it with Ampligen, yet more have faced it with IVIG.

Now, I am not saying that we can solve all these problems with the above approach, but we must at least start to proceed on the basis that studies must be replicated on similar patient groups.

Everyone on here moans about Fukuda, the Oxford critera ... The ICC and CCC are just as inadequate. Once any criteria is published, it becomes useless, because going to the start of this debate, just as with ADHD, ME has features of a meme.

Look, the bottom line is that we can continue to buy into the conspiracy theory of evil psychiatrists and government cover-ups put forward by Bob, or we try something new.