On the face of it this looks like unhelpful perpetuation of exactly the thing she is complaining about. Let me try some answers:
Nobody knows. The outbreaks people talk about are largely irrelevant.
- What is the origin of the false name “chronic fatigue syndrome?”
It was thought up as a less misleading term than ME and is as good as most medical terms.
- why are well-established biological abnormalities found in ME and published in the medical literature excluded from the government’s ME diagnostic criteria?
There aren't any. And if there were they wouldn't be expected to turn up in diagnostic criteria.
- why has CDC refused to establish a national reporting system for ME?
What good would that do? It isn't a specific infectious disease as far as we know.
- Why has the federal government crushed rather than encouraged attempts to isolate a causative pathogen in ME?
Extensive attempts were made to look for pathogens and nothing interesting found. The consensus is that ME is triggered by all sorts of endemic pathogens.
- How did the specious but prolonged argument over whether ME is “real” or “not real” begin?
Mostly by people writing misleading stuff claiming we know what ME is when we don't.
- Who has benefited from the CDC's longstanding policy of disregard for ME?
Nobody.
- Have any laws been broken?
Who cares?
This misses the point, it is a look backwards whereas she is writing as someone involved at the time.
In Incline Village at Lake Tahoe there was an outbreak of an unknown infection which started among teenagers at a school but then spread out to teachers then the wider community. The local doctors were alarmed so they contacted the CDC. At the same time a similar thing was happening in Lyndonville in NY state and the lone doctor there contacted the CDC but he did not receive a reply from them. It is thought that some of the people from the CDC fancied a paid trip to a resort town so they went to Tahoe.
Because the outbreak started among teenagers the first thought was that this was an outbreak of a particularly virulent EBV so the CDC got Stephen Strauss involved as he his pet theories were about a long term illness he called Chronic EBV Syndrome. The outbreak was never looked at properly. He took biopsies from patients but never published any results or even sent any word back to the local doctors.
Some doctors contacted him and said this was an outbreak of ME but he wanted this to make his name and refused to entertain the idea. Strauss was a horrible man in ways I won't go into. When tests showed that not all of the patients were positive for EBV he was furious and petulantly changed the definition by replacing EBV with fatigue and renaming it Chronic Fatigue Syndrome. The name may have been felt to be more accurate than ME in the wider world but that was a justification for keeping it not the reason it was used.
He then went round the US giving lectures on why CFS was something that happened to "women who want someone to open the car door for them" He was particularly awful in his dealings with Hilary Johnson.
I have no doubt this was leapt upon by the people who wanted ME to be a psychological problem and those who wanted to research fatigue but the idea we are a population who are not seriously ill but just want the benefits of the sick role came directly from the CDC. When money was earmarked for CFS by government but used by the CDC for other things it was justified because they used it to try to help people who were really ill!
There were no serious attempts to try to find the pathogen in ME especially once they said to wait 6 months before diagnosis. Every promising avenue was closed because there was never any money to do large enough trials. It is beyond frustrating to see another small trial of a "new" theory every 20 years.
There has been no serious attempt to find out what is biologically affecting people with CFS. There has been a continual downplaying and trivialisation of everything that could have helped us.
It is always the same and completely understandable that that looking back gives a different narrative than experiencing things as they occur especially when what is common knowledge has been driven by people with an agenda. If you think about the saga of wrenching the trial data from the PACE team you will see what I mean.
They started with lots of excuses for why they would not release data but after many months of facile excuses they hit upon patient confidentiality which was sheer genius. Suddenly they are the good guys protecting people with CFS. That one of their first arguments was that no one would run trials anymore, so universities would drop in the ratings, so there would be less foreign students so universities would have no money, so civilisation would fall, will be forgotten and just their reasonable argument will be remembered.
There may be good reasons why this book is not applicable now but the CDC and other official bodies acting properly and in good faith is not among them.
