Discussion in 'MEpedia' started by JenB, Aug 11, 2018.
It's that people have the illness without the beliefs.
For those not familiar with British English a fag end is a smoking butt, which Wessely appears to be in the habit of picking up. Hope that clears up any confusion.
"Myalgic encephalomyelitis is a chronic disabling condition characterised by Post Exertional Malaise, an exacerbation of symptoms following physical or cognitive effort that previously would not have caused problems. Definitions vary but generally require the condition to have been present for 6 months or more and include the following symptoms:
Tender or painful lymph nodes
Myalgic encephalomyelitis is frequently triggered by a viral infection although there may be a gradual onset. It has been reported in both epidemics and sporadic cases."
Maybe another thing that could be done on the first page would be to have a few brief quotes from patients explaining what it is like. So someone could say, for example, how they feel like the faulty battery on a phone that only charges to 10% and quickly goes flat. That would get around the problem of us claiming that it's an energy production disease when we don't know, but would communicate the feeling of an energy deficiency.
And another quote from a severe patient, about how limited they are, could illustrate how serious the illness can be.
It seems to me that the target audience hasn't really been defined. There's an underlying belief that, if we work hard enough, it is possible to define things in clear, unambiguous ways, but that isn't true: we speak different versions of English depending on our backgrounds, and words have different meanings according to our experiences. So, what language are we aiming to use in these pages?
At my level, this discussion boils down to
We haven't really any useful understanding of ME, no reliable way to treat it, and no reliable information about its prevalence or prognosis. We don't even have an agreed set of criteria to define it, nor agreement on what it should be called. We do know three important things.
Very little research has been carried out on it over the last 40 years: very little money has been spent – much of it coming from charities or donations.
Many claims are made about worthwhile treatments, but none have been able to show they are effective. A major culprit here is a small group of psychiatrists who have claimed that CBT is effective, and who have cultivated a large religious following, but their studies actually show CBT is ineffective. Their believers are still devout worshippers.
The range of symptoms and of severity is very large: for most people it wrecks their lives.
You can get interminably bogged down in terminology, details of studies, philosophical understandings etc.: none of that changes the fact that, if you are a doctor, the best you can do is try to support the patient and treat symptoms, and that if you are not, then just be very grateful that you don't have it – it mows down everyone in its path: only a few manage to sprout up again.
And to be even clearer, and avoid further confusion, I would always know it as a cigarette end rather than a ... smoking butt.
Lack of funding forces charity to cut services for young people with debilitating disease - Chronicle Live[https://www.chroniclelive.co.uk/news/north-east-news/lack-funding-forces-charity-cut-15020025]
“ME is a chronic disease that affects multiple body systems, including the nervous system, the immune system and the body’s production of energy. It can cause greater functional impairment than many other serious medical conditions“
I think this is pretty ok from a newspaper article recently as a description.
It could be added that it used to be thought that the illness was mainly perpetuated by modifiable unhelpful behaviour and beliefs, that model is now discreditated with some drs calling for an apology for the widespread belittling and dismissal of the illness which has resulted in the field not advancing in understanding and treatment as it should have.
This is a big question and not answered easily. I am not sure if it is answered at all.
Edit: Wanted to add, interesting discussion. I thought about this a lot and I have no conclunding answers.
In my case it must be magic dust, because surely my biology would be more consistent and reliable than the random thoughts and misunderstandings rampaging through my brain.
Alternatively, I could make a case that all of it is merely mathematics, mostly probability theory.
Way back when I was doing my teacher-training year, the science tutor came in and, dragging his chalk across the blackboard, made that screeching sound that runs up and down the spine. He explained that it was cause by tiny creatures: the chalk tickled them – they squealed with laughter, and there were so many, the sound was very loud. Then he invited us to argue that he was wrong.
I was very impressed with the way in which he dealt with each argument: it reminds me a lot of many of the circular arguments that go on and on in many ME sites. His concluding remark though, I thought, was very relevant. A theory or explanation is only of any real value to science if it moves us forward in our understanding, and takes us to new places that we can test that we would not have otherwise anticipated. Surely it is irrelevant whether people talk of biological and psychological processes as being different or argue that all processes are based on physical processes: the key matter is whether ME can be affected by talking therapies, and so far the evidence is that none has been shown to do so.
If you really want to ask who is steering the boat, what about sparing a thought to those countless organisms that are a fundamental part of our bodies? I'm vastly outnumbered by mine. How much do their activities determine our lives? Certainly without them, we wouldn't have lives. Couldn't we even regard the mitochondria as external invaders from a bygone age?
I reckon it's the microfauna that are controlling me: as I said, magic dust.
Would you say that syndrome is more accurate term based on our current level of knowledge?
For the purposes of this MEpedia page, would you say syndrome/condition/illness/disorder/something else?
Your comment implies a degree of unpopularity that I am not aware of – or is it just that you assume that what you would write about this particular subject not be well received? I for one would be very interested to know how you would draft the first paragraph. And I would be surprised if others would not value your input.
I hope everyone agrees that making inaccurate statements about ME, or presenting as facts ideas which are not supported by reliable evidence, will be counterproductive. I think the policy should be to err on the side of caution – if in doubt leave it out.
Is the problem not that the unhelpful beliefs hypothesis/dogma is unfalsifiable? At the very least it is unsupported by any reliable evidence.
I suspect that anything that is written specifically to try to counter the BPS view may be counterproductive for the reasons Jonathan has given.
I thought your suggested opening paragraph was an improvement but I don’t like the quotes idea. There could be a separate quotes page somewhere else (if there isn’t already) but including such quotes in the main page risks introducing unnecessary subjectivity and bias. I suspect I am in a minority, but I have never found the battery analogy to be particularly useful in describing my condition.
I think it would be useful to say something about the fact that research has shown that people diagnosed with ME are ”measurably more disabled” than people with MS (1,2) and have a lower quality of life than people with most other chronic illnesses (3,4)
But what "is" this "me" of which "you" speak?,
Sorry, that's a question for another thread.
It seems you have chanced upon what I think of as my two contributions to science. Firstly, that internal biological communication between cells has evolved to be random in an important sense that explains the way autoimmune diseases arise. Secondly, that we are nothing more than colonies of microfauna, and that has some very strange implications for the nature of 'mind'.
Everyone knows that evolution works by random changes being either retained, having been successful, or not. What is less well known is that in order to learn new tricks during life the body's cells have to use the same principle. DNA cannot programme either the immune system or the brain to create purpose-built machinery to make molecules that fit microbes exactly (antibodies) or neural connection trees that recognise grandmother. So the DNA programmes the immune system and the brain to create a vast array of random variant machineries so that when the microbe or grandmother comes into view there is already a set up for recognising them.
More generally, I suspect that the brain throws up thoughts at random as a way of solving problems. Roger Penrose claimed that Godel's theorem proved that our brains do not solve tricky mathematical puzzles the way computers do because we can prove the truth of a problem that would take an infinite amount of time to prove using the method of a Turing machine. He proposed a strange quantum computational capacity involving gravity and circles backwards in time. He would have done well to talk to a biologist first. Of course we do not solve puzzles by computation. We solve them by having masses of random connection patterns in our brains already there which throw up a vast range of random answers and if we are lucky one of them is right. We still have to check that the answer works but if it is couched in a form that shows that there is a generalisable reason for there being no violations of the theory then there is no need to do the infinite checking the Turing machine has to do.
I think there is a lot in that. The real problem with the BPS approach to ME is that it doesn't work. But I think it is reasonable to think that it does not work because the state of being ill is not caused by the sorts of brain processes that involve believing you have encephalitis or Lyme disease or an illness made worse by exercise. It might be that being ill is caused by the brain inappropriately sending out signals of the sort it sends out when it meets a virus but these are not thoughts.
I don't think we need to invoke the microbiome. What people forget is that we are already massive cellular colonies. Every brain cell is a separate living organism, even if, like the Mekon, it is totally dependent on support systems from other cells. Our lives are entirely determined by this ant colony of cells. There is no additional 'me'. There is no single conscious mind. That takes a bit of getting one's head around but I am hopeful that within decade or so we will understand exactly how thoughts can be 'physical'. Once we have done that we can point out to the dualist BPS people that they are talking garbage in scientific terms.
Exactly. There are me's and they are entirely physical (as well as mental), but there cannot be just one of them.
Additionally, there are no guarantees that for ICD-11, PVFS, BME or CFS will remain under the neurological chapter.
I shall be publishing an update on the current status of these terms for ICD-11 on my Dx Revision Watch site in the next day or so.
Just to note that in 2010, ICD Revision published a discussion paper, a copy of which is archived here:
in which consideration was given to potentially including a new chapter for ICD-11 for Multisystem Disorders.
Multisystem Disorders Aymé, Chalmers, Chute, Jakob
ICD has traditionally grouped diseases by aetiology and by affected organ system. For ICD11 the creation of a new chapter for multisystem disorders has been proposed. The following text sets out the rationale for and the possible scope of a multisystem disorders chapter. The concept of multisystem disorders is not new, however the meaning of “multisystem” as used in the literature is largely implicit and rarely defined explicitly except for case definitions of the CDC, and a mention in Webster’s Medical Dictionary. There is an important group of significant disorders which have varied manifestations and can affect so many organs that it is not possible to tie them to a single predominant organ system. Examples include systemic lupus erythematosus, dermatopolymyositis, Behçet disease, polyarteritis nodosa, sarcoidosis, Wegener granulomatosis, mitochondrial disorders and many complex heredofamilial and developmental disorders. In contrast, there are many disorders which have an impact on several body systems but which normally have a predominant effect on only one (e.g. rheumatoid arthritis). In the definition of “multisystem” the important point is that there is no dominant system affected, and not how many systems are affected etc.
This proposal was rejected in preference to multiple parenting diseases and disorders which straddle more that one ICD parent class within the same chapter or which straddle more than one chapter. Many terms in ICD-11 have been assigned a "primary" and a "secondary" chapter parent or assigned two or more parents within the same chapter. For example, Behçet disease has been assigned under three parents for ICD-11.
Multiple parenting also allows, for example, neoplasms of the eye to be listed under both the Neoplasms chapter and Diseases of the visual system chapter (though the primary parent code appears wherever a term is secondary or tertiary parented).
(By the way, the ICD Revision discussion paper listed a Maes and Twisk paper at Ref 119.)
There is the potential for ICD-11, for ME to be parented, in the future, under more than one chapter or under more than one parent block within a single chapter.
SNOMED CT, which is an internationally used terminology system for use in electronic heath records and which is cross mapped to ICD-10 codes and to some other classification and terminology systems, has recently retired the use of the SNOMED CT supertype concept: Multisystem disorder across the entire SNOMED CT system.
There had been 90 Children terms under SCTID: 281867008 Multisystem disorder (disorder) and the retirement of this parent concept had implications for all of these 90 terms — not just for Chronic fatigue syndrome and its Synonyms terms.
Many of these 90 Children terms were reassigned under a more specific parent but a few, including Chronic fatigue syndrome, had no new parent assigned to them.
The removal of its Multisystem disorder parent left CFS and its Synonyms terms without a body system or aetiology parent. Now, its only parents were:
Clinical finding (finding)
> Disease (disorder)
This presented an opportunity to request a more specific parent for Chronic fatigue syndrome and its Synonyms terms.
In February 2018, a formal request and rationale for adding the supertype: Disorder of nervous system was submitted. Following a peer review process, the addition of the parent: Disorder of nervous system for Chronic fatigue syndrome was approved by the SNOMED CT terminology leads for implementation in the next release of the International Edition, which was published on July 31.
SCTID: 52702003 Chronic fatigue syndrome (disorder) is now classified under supertype SCTID: 118940003 Disorder of nervous system (disorder) in the July 2018 release of the SNOMED CT International Edition.
This change will be incorporated into the next update of the U.S. Edition (in September 2018), the UK Edition (in October 2018) and all other National Editions, as they release their next updates.
Full report on Dx Revision Watch
See my most recent post in that thread ( Post #172 ).
I have now obtained PDFs for the Tabular List and the Index for both ICD-8 and ICD-9 from the WHO IRIS document archive platform. These are WHO unmodified versions.
In the ICD-8 Tabular List (Volume I, 1967) Page 158:
Benign myalgic encephalomyelitis is not listed as an inclusion under 323 Encephalitis, myelitis and encephalomyelitis.
But in the ICD-8 Index (Volume II, 1969) Page 173:
Benign myalgic encephalomyelitis [as Encephalomyelitis (myalgic, benign)] is referenced to 323 as (See also Encephalitis 323)
So I do not consider it can be said that the term "Benign myalgic encephalomyelitis" was classified in the Tabular List for ICD-8, but it was included in the Index, where it referenced code 323.
In the ICD-9 Tabular List (Volume I, 1975) Page 217:
Again, Benign myalgic encephalomyelitis is not listed as an inclusion term under 323 Encephalitis, myelitis and encephalomyelitis.
But in the ICD-9 Index (Volume II) Page 182:
Benign myalgic encephalomyelitis [as Encephalomyelitis (myalgic, benign)] is referenced as (See also Encephalitis 323.9).
So it cannot be said that the term "Benign myalgic encephalomyelitis" was classified in the Tabular List for ICD-9, but was included in the Index, where it was referenced to a four digit sub class 323.9 Encephalitis (Unspecified cause).
Which tallies with the information for ICD-9 in this CDC document :
"...The term “benign myalgic encephalomyelitis” appears in the alphabetic index and references code 323.9, Encephalitis of unspecified cause. The code 323.9 did not include reference to postviral syndrome. The term “postviral syndrome” was classified to code 780.7, Malaise and fatigue, in Chapter 16, Symptoms, signs and ill-defined conditions."
1 A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases Prepared by the Centers for Disease Control and Prevention, National Center for Health Statistics, Office of the Center Director, Data Policy and Standards March 2001
In Post #172 in the thread that Sly Saint has provided the links for, I have posted links for the IRIS platform pages where these PDFs can be downloaded. (The PDF files are too large to attach to posts.)
I have also posted screenshots for the two relevant ICD-8 Tabular List and Index pages and for the two relevant ICD-9 pages.
Unfortunately, in Germany, in most cases whether you get an "F" or a "G"-(or other "somatic") ICD-Code diagnosis is extremely relevant for doctors to assess your grade of suffering and disabilities. Actually, for any relevant medical, especially sociomedical decision, it matters whether you are categorized as having either a mental or a somatic disorder. I agree that this should not be mingled with the scientific description of ME. I don't agree to state that this is (socio-)medically irrelevant, though. (I would be happy to be infomed that the ICD-Codes were not relevant in other countries, but I doubt it.)
I agree with almost every point above, @Robert 1973 . I think we should be cautios with the term "measurable" in your last point, though:
Aren't these studies based on subjective measures? And could also be interpreted as (wrong/unhelpful) "illness beliefs" or exaggerated perceptions?
I think it would be better to say that objective measures of disability in ME still have to be developed, and perhaps make suggestions how these measures could look like (e.g. compare it with the challenge of objective measures of disability (not to be confused with illness progession) in MS patients -- a field where motoric and cognitive fatiguability has long been neglected as strongly disabling symproms, but researchers are beginning to investigate recently).
Separate names with a comma.