Thread by @RRRR4tothe4

1/ Second Thread

Changing topic to DwME output, and then to unacceptable behaviour re cybersecurity attacks, last year’s letter to NICE + MHRA, vaccines and anonymous trolls....

(an absurd list of misinformation, mistruths + smears we are forced to finally address)

2/ This second thread follows the first:

https://twitter.com/RRRR4tothe4/status/1566382073711149059

3/ There has been feedback regarding language - different language will be used where possible

But sometimes the choice is doing what needs to be done now with the resources available, to achieve a non-published objective. Or not doing it on time, or at all.

4/ Sometimes the audience is not 'you,' but someone else, yet it still requires publication

5/ Before someone reasonably says they'd prefer this or that wording, it's worth knowing that not all conduct versus @DoctorsWithME has been professional, fair, decent or in good faith (also feel free to apply to the DwME Secretariat as a volunteer [e-mail])

6/ Many events have been downright offensive + personal to multiple parties. Worse, proactively misrepresenting our activities to online or policy groups doesn't help DwME use limited time well e.g. this thread

7/ Nor is it in the public interest. Harm to patient focused efforts has been real, and even bled across borders internationally

8/ It might be naive to hope that this thread will draw a line under matters. Hopefully the instinct of some ppl will not be to up the ante, again. Nonetheless, there is inappropriate behaviour that has to be corrected

9/ For those who don’t know me, I spent yrs running global teams of media, marketing + policy focused professionals in different bizs. Focused on driving change, including through unavoidable lobbying.

10/ This requires contrarian thinking 80% of the time - otherwise a problem would probably already be fixed. I am media trained, with consulting, legal and economics backgrounds (with a serving of academia too).

11/ I then increasingly leaned towards creating organisation change in clients and my teams. There is also a technology string to my bow, which I have tilted towards more totally in recent years

But, enough about me…

12/ Firstly, re style that not everyone is used to, some of it shld be normal to a successful ME community. Feedback also often has a point, but often assumes far too much about authorship

13/ Please also note - DwME is a professional association, not a patient charity. Our perspective is thus of professionals in the field. Including those who manage them, hire, fire + negotiate budgets or settlements.

A sign of community maturity

14/ Patients are in our hearts, on our Secretariat, on our Board and our shared interest is evidence based care and decency

15/ For perspective re the most aggressive complaints, here are words that are presumably deemed acceptable by complainants in recent times:

...Endothelial function, manganese enzymes, retrotransposon insertion polymorphism, mono clonal antibody, autophagy, lysosomal, etc...

16/ Not language of the typical pwME over cups of tea. It's also irrelevant to the language of resources,costs and risks in the boardrooms that govern our NHS organisations + local authorities

Point is that all language has a place, however much extra time for polish wld be nice

17/ Secondly, deconstructive behaviour emanating from the S4ME forum must be highlighted. Being the loudest or having the most keyboard time does not make someone correct. Or validate individuals being downright rude, let alone when spreading outright misinformation

18/ Passive aggressive enquiry or ad hominem attacks on a forum, social media or direct comms cannot have a blank cheque

Milder examples include retorts when DwME Associates share self-care experiences (always explained with professional, caveated risk aversion).

19/ Unforgivable examples include directly undermining crowdfunding efforts, maligning proposed funds for research assistance as if it were illegitimate (a sign of professional inexperience, crowd silliness or outright malign intent)

20/ S4ME is EXTREMELY valuable, but membership or a sense of status does not offer papal infallibility. We still hold their good work in the highest regard, including high profile quality output from multiple figures who can be less than gentlemanly.

21/ Ensuring standards is one thing, but deconstruction, misinformation or seeding troll expeditions are something else

Some individuals will remain blind to harm done and initiate another pile on

22/ Big boys and girls are used to the cut + thrust of academic, professional or business discourse. But it cuts both ways. More ownership + policing of culture is necessary. Balancing the needs of the forum, a dominant personality + ad hoc raiding parties must be difficult.

23/ Deleting the worst posts to sanitise forum content is not always enough. Neither is pointing at the supposedly private nature of a forum that anyone can sign up for

24/ There are only x hours a day. Inviting ppl to logon to a forum to address maelstroms is not appetising

Ask around privately. There are ppl with bad experiences, inc ME land household names

Plus ppl with their own rational interests: "It's just not worth upsetting them."

25/ Thirdly, forum members are good at what they are good at. But psychic powers are not on that list

Accepting that not everything is the public domain used to be normal. One does not know what is in someone else's inbox.

26/ And thus one cannot know what is being undermined when smearing people or orgs in public or private arena. Or the costs to everyone from harm done, including to public health generally

Ego before the public good helps no-one

27/ Some harm is direct and targeted, with immediate UK consequence (without realising people across parties talk too). Great harm is often indirect - even with international reverberations that undermine privileged access to governments with a worse record on ME than the UK

28/ Lastly, and connected to forum members not being all seeing and all knowing, there have been multiple, outrageous, ungentlemanly and even offensive smears and misinformation spread regarding DwME (even beyond the above)

29/ This perhaps comes from a lack of maturity or experience from some individuals, which is marginally understandable. If not that, reckless spreading of lazy misinformation leads to questions about motives

30/ We are comfortable to share six examples below re a cybersecurity attack, our NICE + MHRA letter, vaccines and anonymous trolls:

31/ The first example was the verified cyber and identity attack that DwME was subject to last year and became a police matter:

doctorswith.me/cyber-security…

32/ There are still surreal attempts (on and off forum) to claim the attack never happened or was nothing out of the ordinary. That we were either dramatists, fantasists or incapable. This went way beyond saying that ‘DDoS attacks happen all the time.’

33/ I will not get into a ‘my one is bigger than your one’ exchange. Neither with forum figures who tweet anonymously, rather than with the professional Twitter profiles they also have. Nor with those who are not anonymous

34/ What on earth would possess people to make such claims, let alone spin them into a character assassination + misinformation pile-on?

This was disgraceful + deconstructive behaviour against the credibility of allies + patients' interests

35/ These cybersecurity ‘wizards’ repeatedly omitted that the traffic spike was an unusual number of std-devs greater than typical traffic. They also purposely omit that it was not just an attack on infrastructure.

36/ It was part of a wider identity fraud attack on us, at the same time, exploiting third party identities in key ME charities

37/ This was all made public at the time, regardless of smearers not having psychic powers (our authentication systems use proxying technology beyond Cloudflare + were also attacked unsuccessfully, but this was not publicised)

38/ These people threw anything at all, to see what sticks. Attempts went beyond “why would anyone attack them?”. The same people insist that it was wrong to warn the medical, research + patient communities (we shared very normal personal countermeasures).

39/ Security breach responses like this happen in orgs every single day, particularly when faced with complacency. Yet trolls promoted disdain after an ME community based attack had just occurred

Think about the irresponsible implications of that stellar naivety… Mind Boggling

40/ The second example of a smear that went way beyond ‘feedback’ about style was re our letter to NICE + MHRA last year

Complaints stewed in the forum and seeped out - the usual suspects variously described our letter as ‘bizarre,’ ‘inappropriate’ and worse.

41/ Incredibly inexperienced comments were repeatedly made in different places, sometimes with an astounding level of offensiveness

42/ In contrast, the then NICE CEO told the most senior DHSC figures that she agreed with DwME's direct call for a Yellow Card system, drawing her own explicit parallel with the #vaginalmesh scandal

https://twitter.com/DoctorsWithME/status/1462392459904831492

43/ PACE-fed alchemy is not covered by the Yellow Cards - a longstanding pwME complaint that had never received such attention before the DwME letter

Our proposal of a merger of medical regulators was also not some ‘crazy’ idea.

44/ Javid himself implemented the direct precedent of merging regulatory powers following regulatory failure. In 2013, as Financial Secretary to the Treasury, he scrapped the Financial Services Authority and merged some of its responsibilities into the Bank of England.

45/ The specific merger of NICE + MHRA made specific sense for at least reasons:

1) MHRA is responsible for the Yellow Card scheme we called for, with associated data analytics capabilities

46/ 2) Brexit had just happened and the MHRA is no longer a rump regulator - it now replaces EU MRA roles that are brought home
3) Joint benefits from any merger can be more than just fiscal - they include advances from unified digital systems, data + analytics

47/ Once again, there is foul disdain levelled at me personally to this day, here regarding point 3. Claiming that it was some bizarre obsession of mine + that I could not see past my ‘personal interests’.

48/ This abusive commentary ignores basic policy + management reality when assessing potential for organisational change. Some vitriolic critics might be blinded by inexperience. But if you don’t like modern reality, I have a DeLorean complete with flux capacitor to sell you

49/ The letter also contained FOIA requests, structured for multiple stage replies. These were also moaned about. FOIA reqs don’t always take the single-shot form commonly recommended to citizens.

50/ They can be part of a wider strategy, some groaning in detail, some brief, like the example in the previous thread:

https://twitter.com/RRRR4tothe4/status/1566383599980609536

51/ The third example of smears was against DwME inclusion as a relevant professional association in the NICE Implementation Statement. However much the forum wishes to disassociate from that, it was seeded there.

52/ One medic undermined the work of many colleagues, in DwME and whose work is aggregated by us. Unconscionable harm was done, presumably to now be denied, but hopefully temporary

53/ Whatever education recommendations come from the DHSC review, remember that medics have been trained to ignore ‘activist’ ME patient charity resources. A professional voice of colleagues is needed, hence DwME.

54/ The alternative is BACME, the trade union which continued to promote contra-science even after the NICE 2021 publication and has a v negative history (we do welcome eventual education of all BACME members)

55/ The fourth example of bad faith conduct is in relation to our announcement of England’s largest 500k patient GP super-practice agreeing to make flu vaccines available to all pwME (as per the rules). Again that single medic cast shadows of doubt on our announcement.

56/ The reason? They were unaware of it from elsewhere, repeating mistrust and again breeding cynicism

The public effect is to undermine patient access and DwME, again.

57/ For all the good work they've done, perhaps the figure is naive about the continued importance of their online meanderings. But such loose talk leads to real harm

58/ The fifth example starts with a notorious anonymous troll, an obsessed contra-scientific activist whom the usual suspects are happy to promote nonsense with (whether on forum or soc media)

These should be trivialities, but accumulate into real harm

59/ For context, this is just one example of how this troll is worse than manipulative and abuses false authority through choice of Twitter handle:

https://twitter.com/PhilM64/status/1555255715626991618

60/ When a major charity promoted our launch, that troll smeared a specific page on our site for inclusion of a graphic. This image includes small unreplicated studies, a perennial problem due to chronic underfunding.

61/ The image is specifically described as a forward looking ‘Summary of Research Avenues’, a point that is conveniently ignored

ME science faces many small unreplicated studies, sometimes analogous to each other in a whole.

62/ They have to be treated with appropriate caution, but to cut them out of an already incomplete picture is dogmatically bad science and paternalistic

Such an account should simply be ignored, but it does gain traction.

63/ Worse, it is often validated by public interactions with the usual suspects. Regardless of how our site could be improved, agreeing with selective misreading of what our site actually says is negative

64/ This account also exchanges smears with the usual suspects, re-joining the bizarre effort to undermine the above cyberattack response + DwME policies. An unholy communion

65/ This troll also complains of being accused of the attack (some of the usual suspects even joined in the pearl-clutching). It was not. But how do you accuse an anonymous troll that you don’t even identify?

66/ What was pointed out was that they had shown enough amateur IT knowledge to incorrectly discuss potential factors. All on the record, while smearing our cyberattack response

67/ Lastly, on a personal note, not all of the forum seeded vitriol has been directed at me personally. But much has, especially some of its most offensive, ad hominem + unprofessional elements.

68/ Including vile character assassination attempts across public + private communication platforms, which deploy the inexperience highlighted in the above events

69/ The nonsense that either DwME comms, activities or strategy are just me has been a convenient way to limit fallout from generalised attacks rooted on forum. To feign reasonable behaviour. “I am not criticising the Tsar, just Rasputin.”

70/ The repeated smear that I am selfishly pursuing my legal, policy, corporate, tech or other interests is offensively risible, naïve + childish

Speaking for myself, I have plenty of other things to do, without asserting rights for people who are not interested in them.

71/ But I and we do so because it benefits millions without a voice. I know this applies to all of our Registrants

Some have rightly commented that I am not a medical doctor. Some vested interests, trolls + forum members clearly hope that invalidates my contributions.

72/ These attempts are amusing. Like many people’s, my PhD was partially on behavioural science + significantly more quantitative than the flawed research beneath medical norms. But this is a shallow statement. I know PhDs whom I wouldn't trust to cross the road.

73/ And a reasonably alert school child can rapidly understand the failings in medical PDFs (I wouldn’t call them ‘research’, because of the irrelevantly low standards).

74/ The key point is that I look forward to the day that the biggest failings in ME + #LongCovid research are too difficult to immediately understand. That’s how it should be

75/ I want to praise my Board colleagues, our Science Writers, Fellows and Associates for all their work. The broader community are all very lucky to have them. We are all very part-time volunteers, but are very proud of what has been achieved so far.

76/ Their efforts are world leading and trailblazing, even when we have to compensate for unnecessary harm done. Our real problem is time and energy versus other commitments.

77/ We are all very busy even without pandemic, NICE + DHSC events consumed time that we had planned to polish + start other things

These threads were necessary, but the second has not been fun to write.

78/ I don't expect that I will reply to many responses on these two threads, if any. History suggests another public+private pile on. Some will seem innocuous, like the misinformation discussed above.

79/ I will turn off updates + block where I do not have the stamina to deal with the obsessive blindness. Points have been made sufficiently. Reasonable people will understand

There are no monopolies in a pluralistic community, including by DwME.

80/ I and we continue to wish the S4ME forum well for its continued invaluable contributions. They are an asset. With human factors to manage, including off forum factors

(I am also grateful to have not broken the 177 tweet thread world record, even across both threads)

81/ Linking again to the first thread, which is more important:

https://twitter.com/RRRR4tothe4/status/1566382073711149059

@threadreaderapp unroll

Thread 2 unrolled into a single webpage here:

threadreaderapp.com/thread/1566396…