I would describe my onset as Holmes +++. And the first doctor I went to see described the myriad symptoms I presented with, including marked stiff neck and upper arm ache, which continued for a very long time, as atypical mono, basing the laboratory evidence on EBV titers, which we now know are problematic as a diagnostic tool.
The Holmes definition, in my view, was a sop, a stopgap, an evasion of a developing, widespread health crisis. It was more than anything a rhetorical feint rather than good science and allowed fatigue to be the face of the illness.
On the other hand, Ramsey and people like Shelokov and Parish probably never thought that their work was definitive. This should have been the beginning of the conversation.
Whatever intellectual value Ramsey's m.e. had at the time, it provided a conceptual life raft, a place of clarity, a bulwark against the forces of reduction and trivialization. There would have been no significant well defined touchstone for the reality of the illness, something that validated Royal Free and established a lineage, a way of addressing something that grew more and more contested without Ramsey.
Once there is enough money for research, and the diagnostic challenges framed appropriately, we can probably expect a great deal of revision on just what we're talking about when we talk about m.e. and cfs.
Samuel, of the estimable Kafka Pandemic, often speaks of m.e. lite, how important it is to include both the sickest, the house bound and bedridden, but also the people who are functioning, to whatever degree, in our discussions. These aspects are important both from the point of view of research but also advocacy. We don't know who is vulnerable and how 'light' a version they might have. With the emergence and triumph of the BPS position, there was no choice but to hunker down in the clearest, most well defined position in order to wage a fight for our lives but that deeply compromised the science. Part of the story of m.e. is a betrayal of intellectual inquiry, the short circuiting of critical thought.
I expect, one day perhaps soon, the pervasiveness of the vulnerability of great swathes of humanity to m.e. and related illnesses will be alarmingly evident.
I share your desire for comprehensively knowing how things were made so problematic but wonder if we can expect revelation or will have to demand it?
Interesting. I wonder if that may be the place where two illnesses were erroneously and catastrophically lumped under the same name. I wonder if there's a subset of us that initiated with herpes viruses and another subset that initiated with ME.
We could easily share a lot of symptoms in the long run if both resulted in immune dysfunction. It's even possible that over a long period of non-treatment, those of us who started with the ME pathogen (an enterovirus?) developed chronic herpesvirus infections and vice versa.
I'm looking forward to the day when our history, although a still sad story of medical failure, will be more clear.
