The new name for Da Costa’s syndrome is the chronic fatigue syndrome, and my previous webpage on that topic can be seen here.
I began studying my own health in 1975, and soon developed some effective methods of improving my health with mild exercise, and within a few years was able to recognise and prevent the cause of severe fatigue that affected me for several months at a time. As I proceeded I found that the name of my ailment was Da Costa’s syndrome, and I began learning the medical language and reviewing the relevant journals to gain more information. I also wrote many essays to describe the topic and how to manage the symptoms effectively, and then wrote letters to newspapers and eventually, between 1993 and 200o, published a book which eventually exceeded 1000 pages.
As you can appreciate, I learnt a lot about that subject. However when I joined Wikipedia in 2007, some of that information was added by another person, with my approval, but other editors deleted it, and then in 2008, when I began adding useful information to a page about Da Costa’s syndrome, two editors began criticising me.
One of them arrogantly claimed to have an annoyingly high IQ and to have the ability to become an “instant expert” on almost everything.
I have described what happened below, but it would be useful for you to consider that I had learnt the medical language, and had been studying the subject, on and off, for 32 years, and those two individuals tried to deceive me with jargon, and told lies to all of the other editors, administrator, and readers.
Although two anonymous editors tried their hardest to defame my character, and delete my name and ideas, and arranged for me to be banned from Wikipedia, my theory and methods are still in the treatment section of the page about Da Costa’s syndrome, where I wrote them in plain English. here.
Those methods have been there for five years now, and thousands of other editors have had the opportunity to view the text, including two groups, called WikiProject Medicine, and WikiProject Psychology, who have been specifically invited to edit it, by way of a template at the top of the discussion page (here). There had been 33 minor edits in that time, and although there has been a reduction in the length of text, the main aspects are still there. See the current version of the treatment section of 28th April 2013 here.
When I checked those pages in mid 2013 I noticed that they contain a lot of disinformation, but more notably many errors, including a major error in their understanding and description of the nature of the problem which means that the usefulness of the page, and the effectiveness of the treatments would be impaired. Of course they have banned me, so I don’t have any obligation to fix their mistakes. See here.
How two editors delete, hide, and destroy evidence in Wikipedia
Firstly a quote from Wikipedia
“We want you to imagine a world in which every single human being can freely share in the sum of all knowledge. That is our commitmentâ€”and we need your help.” here.
While I was involved with Wikipedia I was adding information which included useful, scientifically proven facts. However, there were two anonymous editors who, in particular, acted as if they were the owners and dictators of various topic pages.
They achieved their objectives by writing, or interpreting, or adding loopholes into the rules so that they could control what information was allowed to be kept, and they deleted everything else, and hence they could pre-determine what the users of that website got to to read, think and believe.
i.e. Instead of contributing information, they spent their time deleting it, or hiding it in jargon, and essentially destroying evidence.
The Scientific truth versus the fiction in Wikipedia
The main page which I edited was called Da Costa’s syndrome. It is a very common condition which conservatively affects 2-4% of the population, or more than 200 million people internationally. However those two editors tried to give the false impression that it is a rare ailment by using the RareDiseasesDataBase as a reference. It claims that it only includes illnesses which affect less than one in 20,000.
The modern name for the condition is the Chronic fatigue syndrome, however, the same two editors argued relentlessly that it was not the same, even though another editor added it to a list of related topics before I started on the page, and even though a proper study of history makes it obvious.
There is scientific evidence and proof of physical and physiological abnormalities for the main symptoms, however, the same two critics wrote that there is no evidence of physiological abnormality seen on clinical examination.
A twenty year follow up study showed that the condition is chronic, but the same two editors deleted that fact.
The medical research on the topic spans 137 years, yet, in order to hide the controversies, changes, and progress that was made, those two editors only kept the first few years, and then deleted more than 120 years of it.
After deleting all of that information with systematic precision their final article describes it as an anxiety disorder, and a somatoform autonomic dysfunction (which means trivial or imaginary symptoms of psycholocical cause).
My previous essay about . . .
How two editors deliberately falsified the facts on the Wikipedia page about Da Costa’s syndrome – which is now called the Chronic fatigue syndrome
Wikipedia has the objective of becoming the sum of all knowledge by inviting all people to add information about all topics from all sources in society.
In December 2007 I saw a page called Da Costa’s syndrome which had only four lines of text and no references and an invitation to improve it, so I began that process.
It had a section called “Related” which included the hyperventilation syndrome and the chronic fatigue syndrome. I knew that the symptom of breathing abnormality was completely different to the breathlessness of panic induced hyperventilation, and that the label was misleading, so it was later deleted. I also knew that the label of chronic fatigue syndrome was just another modern name for the ailment, and although it has been removed from that section it is still mentioned in the text.
During the next 12 months I also added the following scientifically proven facts . . .
1. The typical type of breathlessness
There is an occasionally symptom of breathlessness, which sometimes occurs at the end of inhalation, and feels as if the person is not getting enough air, so they force the process and feel as if they are breathing in against an obstruction. That symptom was scientifically examined by a researcher named S.Wolf in 1947, and found to be associated with a temporary spasm of the diaphragm (the main breathing muscle), and was therefore real, and not subjective or imaginary. Other associated abnormalities were also found in the breathing process.
2.The typical lower left sided chest pain
In many cases there was a tenderness between the ribs in various places, but mainly on the lower left side of the chest, and an occasional brief, but sharp stabbing pain in that area which felt as if a sewing needle had passed through the skin and gone in and out to the depth of 2-3 cm. I added that a 1956 book by Paul Wood (a world authority on that subject at that time) had researched the cause and found that if he inserted a pain killing injection into the skin of that area that it would’t relieve the pain, but if he injected it to a depth of 1 or 2 cm. that the tenderness or pain would cease. He also suggested, as I had, that strain on the ribs caused by faulty posture was a possible cause. He also gave the example of how cranking a car engine, or lifting heavy objects could bring on the symptoms. (The modern label for that type of chest pain is ‘costochondritis‘, which is also used as an alternative label for the complete set of symptoms seen in Da Costa’s syndrome).
3. The typical types of fatigue – An abnormal pattern of tiredness, and the abnormal physical response to exertion.
There are two types of fatigue where the first was an abnormal pattern of tiredness, and the other was a reduced capacity for physical exertion. I added some of my own ideas of postural compression of the air in the chest reducing the flow of blood to the brain to cause the faintness and tiredness. I also mentioned that the consequent long term strain on the blood vessels below the chest could weaken them, and be responsible for inefficient circulation and problems with exertion. I also included references from the early 20th century by Sir Thomas Lewis, who attributed the tiredness to poor blood flow to the brain, and Sir Thomas Lewis who renamed the ailment “Effort syndrome” because of the prominence of the symptoms during exertion. (The modern label for inefficient blood flow to the brain is ‘orthostatic intolerane‘, where one of the other symptoms is a tendency to feel faint when moving from the laying to the standing position).
4. The physiological abnormalities with each symptom when they are examined thoroughly
I also referred to comments by Paul Dudley White (the world’s top authority) who stated in his 1951 book that when each of the symptoms was studied thoroughly there was evidence of physiological abnormalities to confirm that they were real symptoms, and not just subjective or imaginary problems. He also wrote that they were not the same as those of anxiety or heart disease, and were not the same as the symptoms of effort experienced by healthy people. He also explained that they can occur in the absence of anxiety, and he described it as “a kind of fatigue syndrome” that is “more or less a chronic condition”. (Obviously if you combine the words “fatigue syndrome” with “chronic” you get the modern label of “chronic fatigue syndrome“).
5. Other scientific and empirical evidence
I included other scientific evidence to support each item of information which I provided about the nature of the ailment, and I recommended the inclusion of a portrait of the typical thin and stooped physique of a patient who had that set of symptoms.
How they deleted all of those scientifically proven facts
During that twelve months I was constantly being hounded and harassed by two editors who acted in an ill-mannered, disrespectful, arrogant, unco-operative, resentful, spiteful, and vindictive way, and who took turns criticising everything I wrote.
Typically, I would add a paragraph of information each week, and within a few hours one of them would argue that it was unreliable, or needed to be deleted because it broke one of Wikipedia’s rules, and the other one would then use that as an excuse to delete it. I would add another paragraph the following week, and within a few hours the other one would accuse me of breaking a rule, and the first one would then come along, and make a pretentious comment about just noticing the criticism by co-incidence, and deleting it.
How they replaced the aritcle with false and misleading information
While they were systematically deleting each and every piece of scientific evidence of a physical and physiological abnormality, they would be altering the text in a misleading way, so that it described the ailment as an anxiety disorder where “a physical examination does not reveal any physiological abnormalities”(end of quote).
The article also referred to several hundred psychiatric labels in the text, the reference list and notes, and in the links to the categories of Anxiety disorders, and Somatoform disorders at the end of the page, and to the classifications of ICD-9 and ICD-10 lists at the top right hand side of the page.
In other words they falsified the facts about the disorder which the readers of Wikipedia get to see.
They eventually set up an arbitration page where they told dozens of lies to other editors, and denied me the right of final reply, and arranged for an administrator to use Wikipedia’s “ignore all rules” policy to ban me.
Compare my full version of research history with their small, falsified, and misleading version
The text which I provided has a full and accurate account of the various aspects of the history of research, but some of the information in the latter sections is more detailed than I would have provided by choice. However, the additional information resulted from constant nitpicking by the same two editors who would argue that I shouldn’t include my own ideas and research, so I would provide top quality information from independent sources, and then they would argue that it was “old” and demand modern references, so I would then provide them, and then they would demand that only references from the most recent five years was acceptable etc. My version can be seen here.
The absurd fact was that their own very small list of references contained older items.
The incomplete and falsified text which they provided by the time I was banned, and which has not been changed in any significant way in the five years since can be seen by scrolling to the end of the deleted text here.