The order of magnitude is off — ME/CFS is a human rights issue

the order of magnitude of the scale and scope of the problem is completely off. [perception and addressing of.]

i posted this on a thread briefly then deleted it and reposting it. i don't know where to put it. that is not the best place.

a few notes about human rights. WARNING: i am not able to be coherent. and this post will not be polished.


this is the big thing we keep running into. and do ourselves. the order is off.

these are some examples chosen randomly.

1) NON-BIOMED PAPERS are completely premised on victim
diseases being nonexistent, trivial, or badness.
2) BIOMED PAPERS have overwhelmingly thought the disease
is always like mild altitude sickness or hangover.
3) MOST DOCTORS never see anybody who cannot get to their
office.
4) MOST SCIENTISTS never see anybody who cannot get to
their lab.
5) MEDIA at most think the persecution is "stigma" or
"disbelief". like a used car salesman's stigma. kind
of annoying right? is the problem with victims of mass
human rights violations that they had a "stigma" or
"disbelief"?
6) THE POLITICS is downplayed. THE CORRUPTION too. THE
HISTORY is considered fixed and wasn't that bad anyway.
7) EDITORS encourage all of this. PROFESSIONAL GROUPS
too. PAPERS are not retracted.
8) LACK OF SERVICES making survival impossible
is not on the radar.
9) WIDTH OF SEVERITY RANGE, DISEASE PROGRESSION, medical
malpractice, denial of autonomy, number and identity of
diseases, number of symptoms, destruction of
populations, number of perpetrators, scope of pointless
fields, deaths not even known about at all.
10) some communities even sometimes adopt the narratives, rules,
claims, or sensibilities of their persecutors. joe public too.
11) MORAL INVERSIONS are rife. they are the norm. i will
define moral inversion as: the ones causing the
problem are considered good and the victims are
considered bad. they are completely unrecognized.
nobody cares.
12) "MORAL INVERSIONS LITE" are also common. things that
are orders of magnitude smaller are considered larger.

the [perception of] scope and scale is COMPLETELY off. the order of magnitude is not taken into account. by basically anybody.

below i will incoherently bite off a tiny chunk of a toic that almost never gets mentioned: human rights. human rights is central.


the international human rights community is a train wreck, this is for variety of reasons including cold war politics and fashion following and confusion about what human rights are and are not. but this community highly needed to engage. it can bring results.

we've tried to do that with no results, but there are also specific things that we have not sufficiently tried.

example specific thing is to get a special rapporteur or mandate holder position created for the exact problem we are dealing with. there are existing ones that are relevant but misopathy needs to be created as a focus point.

that means persuade the human rights council. 47 representatives from countries. sounds hard right?

but there have been many mandate holder positions and some srs created. other stuff we do will likely prod hrc as a side effect.

one example that can be done and done A LOT is reporting the mass cross-cutting hr violation we are talking about to the high commissioner on human rights. lots and lots of victims and organizations can do this. also maybe the biggest specific thing i want done is to get convictions for crimes against humanity [cah]. take a look at the law, elements doc, or my sig at bot of post. there are more things too. existing srs must know.


JUST TO PROVE THAT STUFF CAN BE DONE: article 7 (cah) in the rome statute was recently updated in accordance with an activist population. that's the statute that created the international criminal court.

never mind what the change was. it doesn't matter whether the icc has been efficacious. (but the statute has strong cynosure power in jurisprudence and there are many national versions that copied from it.)

i am merely saying we as an activist group can in principle make change too.

we have a large honking mass human rights violation underway, and it is big. big, with long history. really obvious letter and spirit of the law/community stuff. by which i mean, the event that makes our populations victims is DEFINITELY within the bailiwick of the international community. when i say we i include all the other diseases because this is not only m.e.

the failure of that community to recognize the violation and act on it is a clear massive outrage. not hyperbole.

the community/laws are in general lacking in understanding that mass hr viol that are medical and huge and cross-cutting are numerous.


i think we lose sight of this, even if we don't know anything about human rights. we get so inured to being treated as subhuman that we even recognize OTHER victim groups' hr red flags while almost accepting our own.

we just sort of go like "yup, we have just been dealt a blow that will attack health of many lives massively but what else is new? we have no recourse for this or that but what else is new? no vax studies but what else is new?"

but the red flags are the air we breathe. they are the water we swim in. they are so common we don't even really notice them except to say yeah me too. yet hr community would recognize them as such in any other group.

bmj, whatever. anything. anywhere. there is an example IN THIS(*) THREAD EVEN. here is the red flag:

(*) (the thread that randomly made me decide to post this instead of letting it drop yet again.)

> And yes IRL the only times I speak to others I'm normally faced with people who at best can't look me in the eye or side-step what I've just taken huge energy to say. I'd like somewhere I'm not faced with dystopia so I know which way is up. My whole adult life has been keeping myself safe and making decisions re: such potential confrontations.

(please note that this is not a cherry picked example. it is like tapping into the electric grid anyplace in the world that has one and just drawing out some electricity at random because there is no need to go anyplace else to get it.)

can you see that that is a red flag for a mass human rights violation? it is CLASSIC. the hr community SHOULD SIT UP.

as an example, go take a look at, say, jurisprudence on war crimes. you will get quotes. some will be similar.

or take a look at genocide watch's list of warning signs of genocide. our case is NOT best characterized as genocide (and does not fit the law either. i don't want to get into the details here) (but a top genocide scholar did tell me it was genocidal with an -al based on my description but whatever). but you might notice a similar kind of feeling from the earlier signs and denial sign to the feeling we have had from our history. there's a youtube. guy talking. no stressful images. not saying the points exactly match.


the problem is not just a small bps cabal. cabal include perpetrators though. it is not just 30 years. [i was persecuted in the 1960s.] not just exercise and illness beliefs. not just invisibility of symptoms or signs.

when you include the allied fields and you get those perky chirpy phd students who ask us to fill out questionnaires they really belive us really they do really the m.e. is real really and their advisor told them to study us and they believe us really and you look them up and it is quite clear what their objective is.

WHAT ARE THEY GOING TO DO WITH THEIR LIVES (after putting in their dissertation that doing their phd was rly rly hard and later feeling supernaturally justified and entitled in their epistemic authority) EXCEPT DESTROY DISEASE POPULATIONS?

others include justina pelletier and many diseases. remember nasty nurses forum?

but it is not just these specific things or ideologies or bigotries.

it is the entire medical industry and the entire (industrialized?) world. the nature of mass hr viol.


so i think we need to define or name the problem better. some do so as a sociopolitical phenomenon called misopathy. like say war or racism. that is what we are dealing with. they can be systematic or widespread.

next: the victim populations are not just m.e. it is a bunch of diseases.

and oh never mind let me get to some definitions. cross-cutting means a topic that goes across countries (or did i forget and get that one wrong). a big mass cross-cutting medical hr violation. that is stupid un-speak. just know it so you can complain at teh office of high commissioner for human rights. and do not trip over insane un-speak like using mandate for mandate holder or broken links or inconsistencies etc. just send.

best to stick to mass and cross cutting. probably. you can include individual or country examples.

(or if you feel like it places like the world health organization, nihr (national thingies) or ngos like physicians for human rights or hrw or whatever i don't care there are hundreds. as i said we have tried some. but we can keep trying.)

i'm not going to tell you to do this or that. there are limitations. (and opportunities.) but ... RED FLAGS.


ok back to rome statute. although i am proposing many things that we can do, not just that one, it turns out that modifying it would be right for us: make misopathy an "act" in article 7 [crimes against humanity]. make it explicit. an act is a crime within the framework context.


Definitions go all over the place. But you can roughly think of human rights as those rights you have because you are human. Civil rights are those rights you have because you are an actual or potential participant in society. Some merge the concepts. i don't.

i am focused on human rights because that is the overarching big problem. there is, for certain, a mass human rights violation, and we are, for certain, among the victim populations. ˙pǝzıuƃoɔǝɹ ʇou sı sıɥʇ as if this is not a problem at all. the order is off.

but who cares. if a civil rights / liberties org can help, i'll take it. or hate speech laws or anything else.

scientific misconduct has resulted in years of prison terms. e.g. at nih funded thing.

that will focus perpetrator's minds. a colleague doing the same thing you are doing goes to prison. <-- imo this is key to solving problem


First, there is the concept of right to health. This does not mean right to be healthy. It means the right to the highest attainable standard of health. This was written into the WHO Constitution and has threaded through various treaties and other documents, and scattered itself through various more, so that it makes your head spin, without directly addressing misopathy.

It would be good if we can contribute to the development of this concept, and introduce misopathy to it. It needs to be coherent, comprehensive, and ENFORCED. It needs to not follow fashion, but BASIC human rights principles.


"Along the same lines, the Committee on Economic, Social and Cultural Rights has made it clear that there is no justification for the lack of protection of vulnerable members of society from health-related discrimination, be it in law or in fact" --- <https://www.ohchr.org/Documents/Publications/Factsheet31.pdf> the right to health, unhcr and who, fact sheet 31

...

Positive measures of protection are particularly necessary when certain groups of persons have continuously been discriminated against in the practice of States parties or by private actors. --

[know any disease groups that have continuously been discriminated against?]

Similarly, States should adopt positive measures to ensure that specific individuals and groups are not discriminated against. For instance, they should disaggregate their health laws and policies and tailor them to those most in need of assistance rather than passively allowing seemingly neutral laws and policies --

Discrimination is both a cause and a consequence of neglected diseases. For example, discrimination may prevent persons affected by neglected diseases from seeking help and treatment in the first place. • Essential drugs against neglected diseases are often unavailable or inadequate. (Where they are available, they may be toxic.) • Health interventions and research and development have long been inadequate and underfunded. ... The obligation is on States to promote the development of new drugs, vaccines and diagnostic tools through research and development and through international cooperation. --

Non-discrimination and equality are ... components of the right to health. The International Covenant on Economic, Social and Cultural Rights (art. 2 (2)) and the Convention on the Rights of the Child (art. 2 (1)) identify the following non-exhaustive grounds of discrimination: .... According to the Committee on Economic, Social and Cultural Rights, “other status” may include health status (e.g., HIV/AIDS) .... States have an obligation to prohibit and eliminate discrimination on all grounds and ensure equality to all in relation to access to health care and the underlying determinants of health. --

Human rights obligations are defined and guaranteed by international customary law and international human rights treaties, creating binding obligations on the States that have ratified them to give effect to these rights. --

Individuals or groups wishing to submit information to the Special Rapporteur or draw his attention to violations of the right to health may contact him at OHCHR ... -- <http://www.ohchr.org/Documents/Publications/Factsheet31.pdf>

the inernational community acknowledges mass and individual human rights violations, including genocide, war crimes, and mistreatment of children. each has a body of scholarship, jurisprudence, and activism.

the hr community exists in part to prevent and stop these violations, and provide justice, including punishment and redress. we need to do this for misopathy. imo we fit crimes against humanity but i want it explicit also.


what about the international community? i would describe its response is scattershot, sparse, dilatory, and confused. part of that is because we have not informed them enough. likely. perhaps e.g. long covid alliance can do so.

the rights of sick people are not ONLY violated due to war or prejudice against an ethnic group or authoritarianism. they are ALSO violated due to misopathy, as a sociopolitical phenomenon in its own right. get this right, un.

if hr community understood misopathy as a sociopolitical phenomenon in its own right, its response to health-related human rights violations would be more coherent and efficacious. there would be bodies of scholarship, jurisprudence, and activism that match the seriousness and urgency of the problem. but the community exists for the sake of victims.

i have a more coherent post on human rights, misopathy, cah: <https://thekafkapandemic.blogspot.com/2020/02/crimes-against-humanity_3.html> please take a look at this post if you can. it took me 16 years to write it.


the above is an incoherent description of "THE ORDER IS OFF". for health reasons i might not be able to reply. have wanted to make this a blog post for many years idk if i will. (the idea is kinda referred to in the non-hr-oriented post (<https://thekafkapandemic.blogspot.com/2013/08/why-we-need-to-free-our-minds.html>)

ETA: i want to make it extremely clear that i am in awe of those who are sitting on committees, sending letters, learning as reprters, etc.

 

Agree. Then we have well intentioned efforts to move forward but rarely with the weight of numbers. Petitions too narrow. Too many UK ME organisations (my husband comments a lot on this not being helpful). Where are these 265000 UK pwME?

As @Samuel writes (if I understand correctly) this situation for ME and other chronic illness is so bad and we are stuck inside like an echo chamber. The red flags for human rights violations (as he writes about Health rights wrt WHO) are so obvious why aren’t we responding with proportionate action? I guess only when you escape an abusive situation you can then look back with a fresh focus and see how bad it really was.

 

> But I don't think we have even our supporters on board.

most things i mentioned can be done with a letter or started with a letter.

i think some will hop on board when fashionable/safe. some when they are inspired by results.

thank you very much to all for reading and for comments. want to reply more but not up to it.

 

There aren't that many people with real ME. That figure is based around a 0.2% (1 in 500 prevalence) where as real ME effects 0.02% (1 in 5000 prevalence).

 

> How terrible it is to take young people and teach them that they can't trust their own assessment of how they feel.

that was my case from earliest memories. there was nobody in my world i really knew i could trust. wanted to.

the person with an ethics bacground really poses a problem. it would be good if it si possible to address that imop.

 

> ME/CFS charities are happy to endorse clinicians who say that there is a personality type that predisposes to ME/CFS. Our charities are happy to appoint doctors as medical advisors to the charities who, I think, commit medical malpractice, mostly well-meaning medical malpractice, but medical malpractice just the same. When we write to point out that these doctors can cause harm in these positions of authority, we are told we don't know what we are talking about. And/or we are told that we aren't wanted as part of the charity.

idk what to do about charities. poss. dumb ideas but perhaps it is time for a sea change or raising of standards or review? can corporate governance rules be used to help ensure the charity works according to its stated goals or something? i'm guessing you'd have investigated it.

we don't want to create community discord. but we also want our charities to work for us. we maybe have new tools now?

like, statements in modern documents, etc. or like, the ability to get [back] on committees or so. [not suggesting anything.]


some time ago we [need details] got rid of the leadership of a major charity and it seems to have changed [though it is not as if forgetting its actions in the past [idk if shared personnel] is really possible or forgetting history should ever be].

over many months i privately tried to perfect a poll on the old version of the charity [i feared poll corruption] then somebody quite correctly just scooped me with a straightforward poll and 96% or so said the charity was doing a bad job [idr exact].

in the end, it turned out that the forum had SEEMED like almost everybody on the forum was ok with the charity, ...

... but almost everybody was not ok with the charity. some took that as a lesson not to fall silent when it seemed like consensus was different but to mention their opinions, politely, yes, but not so circumspect that you never get them across.

tldr there had been a false modal opinion. everybody had thought his or her opinion was a tiny minority when it had been the majority.

idk if that has any bearing on the problem this time around, but i am disturbed to hear of your experiences, in any case.