Read on Twitter
1/25 I would like to deconstruct one of the persistent myths about #MyalgicE, because I'm seeing a recurring theme where quite a few #pwme are making sweeping statements on Twitter, that have the unfortunate effect of invalidating the diagnoses of other #pwme and/or #PwCFS
2/25 The myth often comes in two parts: (1) that there is just one set of diagnostic criteria that we should all consider to be Holy Scripture, and (2) there is only one possible family of virus that can cause the particular disease described in the Hallowed Diagnostic Writings.
3/25 Here's one recent example to illustrate my point. "ME is based on Ramsay’s Definition and an Enteroviral trigger. … It’s not ME if something else causes it." (NB multiple #pwme have been saying this for years, so this is just one example, and not intended to be personal.)
4/25 I will just state at this point that I love Dr Melvin Ramsay with all my heart. He was the first to accurately describe the epidemic & endemic forms of the disease I contracted in 1983 (during a documented ME epidemic) and he devoted decades to #pwme, until his dying day.
5/25 But if we are going to put forward a 1988 definition of ME as an immutable Holy Scripture then that's a problem because - as Dr Ramsay would have foreseen - there has now been three decades of scientific discoveries since he died, that Dr Ramsay did not have access to.
6/25 And even if we do consider the Ramsay Definition to be Hallowed Diagnostic Writings, it is important to analyse its contents and then be able to cite it, chapter and verse, to support any opinions that we may form on the basis of Dr Ramsay's excellent set of guidelines.
7/25 So where does this concept that ME can ONLY be caused by an enterovirus come from? I truly have no idea, as it does not seem to be something Dr Ramsay would actually agree with himself. Yes, he did co-author a research paper that proposed enteroviruses as a potential cause:
8/25 BUT.please note there is a question mark in the title of this paper - showing that this was just a hypothesis. And the paper found that 50% of 420 #PwME had evidence of an enteroviral infection - which means the remaining 50% did not. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2429637/
9/25 As the 420 ME patients in this research cohort were presumably diagnosed by two of the world's foremost ME expert clinicians/researchers - Drs Ramsay and Dowsett - it's probably safe to assume they all had actual Ramsay ME. But 19% of them had no obvious viral trigger at all
10/25 The paper describes this 19% as having "insidious" (gradual) onsets or non-infectious triggers. So Drs Ramsay & Dowsett did not require patients to have evidence of ANY viral infection to be diagnosed with ME. So what does Dr Ramsay say about the role of viruses in ME?
11/25 Dr Ramsay's1988 book, "Myalgic Encephalomyelitis and Postviral Fatigue States: The Saga of Royal Free Disease (2nd ed.)" is a classic that every #PwME shud read. Under the heading "Nomenclature" (p.ix) Dr Ramsay states the following about the underlying cause(s) for ME:
12/25 So Dr Ramsay said we don't know what the cause is yet (which is still true), but it's "probably" (and thus not definitely) caused by a virus. And on page 49 of his book he explicitly states his belief that potentially ANY VIRUS could trigger ME:
13/25 Then, on page 53 of his book, he explains that the specific virus that triggers ME is probably of less importance than the possibility that people with ME are having a defective immune response to that virus:
14/25 Another recurring issue is that a number of #pwme repeatedly assert that people who have developed ME following an Epstein Barr Virus (EBV) infection (glandular fever or mononucleosis) can't have the One True ME, and instead have another of the post-viral fatigue syndromes.
15/25 It is true that Dr Ramsay differentiated between ME and the broader class of illness encompassed by the term "Post-Viral Fatigue Syndrome" (eg pages ix to x of his book, attached). He also differentiated between mononucleosis, where people recover within a year, and ME.
16/25 However (correct me if I'm wrong) Dr Ramsay has never stated Epstein Barr Virus can not trigger genuine ME. Instead he stated that "any virus" might trigger ME, so that would include EBV. ME is defined by Ramsay as having 3 defining characteristics (p.ix of his 1988 book):
17/25 So, it follows that a person whose disease was triggered by EBV - or any other virus - or no virus at all -can still be diagnosed with "Ramsay ME", provided their symptom pattern meets these three essential features and is consistent with Dr Ramsay's overall guidelines.
18/25 The fact that the Herpes family of viruses were viewed by Dr Ramsay as legitimate potential triggers of ME is illustrated in the screenshot below (from page 58 of his 1988 book) where he placed EBV in the same sentence as Cocksackie B, plus discussed the SMON herpes virus:
19/25 And here's a synopsis of Dr Ramsay's views, appearing at the top of the final chapter of his 1988 book. (Of note, he states that "reports ... of 'prolonged' and atypical illnesses' following the infection with Epstein-Barr virus are virtually indistinguishable from ME".)
20/25 So back to the enterovirus issue. There is no doubt these very damaging viruses are a very common trigger for developing ME. But there is zero evidence to prove they cause 100% of all ME cases. Plus there is plenty of evidence to show other virus families can cause ME too.
21/25 The final paper Dr Ramsay likely wrote was an epidemiology paper, with Dr Dowsett, intended for presentation at the Cambridge Symposium in 1990. Sadly, he died shortly before that conference took place. https://tinyurl.com/ycczjtrb
22/25 In this paper Drs Ramsay and Dowsett simply stated: "We base our epidemiological experience on 700 patients seen in clinic, some 50% of whom have evidence of enteroviral infection ..." (page 83). Again, there is no claim that ONLY enteroviruses can cause ME.
23/25 Instead their paper re-stated the diagnostic criteria, similar to previous incarnations. While showing they believed there was a viral trigger, there's no mention of any particular type of virus being required, plus the criteria recognise gradual onset & non-viral triggers:
24/25 So why does this matter? When ppl state that ONLY those with this virus, or that virus, or an acute onset (or whatever) qualify for an ME diagnosis according to whatever One True Diagnostic Gospel they subscribe to, they are invalidating the diagnoses of other #PWME. Cruel.
25/25 And don't get me started on all the sweeping statements out there about "ME Is Not CFS" vs "They're The Same". There is little evidence either way, so NONE of us KNOWS the answer, we only have opinions. So PLEASE can we unite to demand decent science that sub-types us! 
But wait, there's more! (A postscript thread) https://twitter.com/TapanuiFlu/status/1273267902196535296
