UK advocacy, campaigning what’s happening?

Apart from
helping to guide NICE guidelines development &
the Nina Muirhead higher education work
The new physio professionals group

Is anything happening in the UK. ? Any campaigns? Any lobbying and developments from the House of Commons debate or plans as to what to do next? Any chance of reforming the APPG seeings lots of MPs expressed sympathy? Any progress with WHO AFME supposed to be working on

I assume
A) we are waiting for NIce Guidelines modification next year
B) waiting for MRC to give funds on GWAS study next year
C) hoping Nina can improve things in education

Shouldn’t there be more going on ? #desperate

 

I take your point regarding MPs. However I check in on a group called the board of deputies who are an important lobbying group /representatives of the uk Jewish community. I got interested with all the news coverage of AS and was intrigued how effective they were as a voice for a community of only around 290 000. They’re effectively staffed, highly organised,meet monthly, are widely connected welcome & and are guided by voices of their extremely large executive committee, draw on talents from within their community (which must exist in ours too) and Lobby effectively on every issue that concerns them until they feel things are satisfactory . Anyway I saw that they had had two recent meetings with ministers on just general matters really So perhaps we need to see ourselves as an important group too with a justice, discrimination & suffering cause and Lobby better. Obviously we don’t have a platform or sympathy to just expect a hearing etc but I just found it inspirational

Anyway I hope#MeaCtion in the uk can become more visible again really. I saw that the American side is lobbying again, this time the CDC and that made me think where’s ours . I think that we shoukd lobby on research funding. It’s a selfish proposition but the improvement within GP education isnt going to really improve my life so I have to look to things that could. The research situation in uk afaic is being allowed to languish. As I have said before I think that the MRC could put in incentivising funds and we could lobby for that, emails plus try to put together a campaign, get press attention after brexit, etc. if Alzheimer’s uk can petition for the state to raise their research funds from £80m per year, we as a community can too. ME/CFS has an economic impact 10 less than Alzheimer’s so should be getting £8m/ year according to cost to economy alone, let alone factors like bring a prime years illness, we are only getting £300 000.

 

these notes are of global import, not just the uk. all off the top of my fogged head.

this is a horribly sloppy post. i' prefer it not be quoted.


first

we need legal action and all democratic channels of all types including

- criminal trials
- complaints to official bodies
- once again insisting that non-m.e.-specific charities [esp human rights] get on board
- hate speech etc. laws
- getting articles into newspapers. never stop.
- getting articles into the medical non-journal literature never stop
- getting papers and letters into journals never stop
- invoking hate speech laws
- many many more never stop

many of our biggest successes have been actions few thought would succeed.

bill moyer's movement action plan says we are in stage 2. channels are what we are supposed to do at this stage.

i am not saying that is the only model we ened to follow but it is clear it exists and i agree that we ened to do exactly that at this stage.


next

fix some of our charities.

some of our charities are dead wrong. the recent mea thing will piss me off for a good long time -- not the writer but the fact that the charity considered this to be acceptable at all.

yes mea has done some good and i am not going to stop being grateful for whatever they do that is good...

... but the recent mea article is rightly symbolic of the WHOLE PROBLEM with our charities. it really means somethign. it is not just a fluke.

the order of magnitude is wrong. by many orders of magnitude.

the attitude is wrong. the modal sensibility is wrong. a different universe from what the wide range of severity and fucntionality of those who have the diease are dealing with. the whole sense of the disease is wrong!

it's a problem of undersstanding what we are dealing with, and what is neeceary to deal with it.

they do not understand severity. they do not udnerstand urgency. they do not understand misopathy. they raelly do not.

i wonder if most have ever visited severe sufferers at for examlpe whitney's level or worse or better or taken stock of what those levels are dealing with.
i suspect they never have.

there are 2 models for an m.e. charity. one is: emulate a standard accepted disease charity. you come in, make coffee, issue press releases, collaborate, etc. if a hate speech article comes out, you issue a pro-forma statement.

polls, articles, ask for donations. an occasional letter.

you could calibrate your watch by this model. you could put a computer in place to do the same things. the only thing the computer cannot do is have a carafe of wine with a regulator or mp. the pro-forma statement in response to extremely recognizable propaganda is ... pro-forma.

the whole thing is scripted from a century ago. the whole thing is basically a pram breaks, the company gets sued, it issues a statement where they fill in the blanks with stock phrases, they try settling out of court. whatever.

reporters report on it pro-forma too.

everybody is sleepwalking.

it will lead to great thigns in a few centuries.

the second model is to realize that m.e. and sibling diseases are targets of misopathy. of a widespread and systematic attack on a population. the pro-forma model...

... will fail.

democracy offers more channels than are being used. and some charities are not backing up those who are trying to use them.

or using them.

to change this, some charities need a complete overhaul. they need a complete change of attitude. tweaks will fail.


next

our community is submissive and reactive. "a hospital is not a hotel". "but this could play into the vexatious narrative" etc. panic.

yeah, sure. nothing wrong with wording things correctly for our superb /logos/ arguments. but zoom out please.

please save the submissiveness for private moments. nominal democracy has options. failuyre to0 get up and fight will mkae scertain that you get kicked again.

nobody will fight for us. some of our charities are paperweights so they won't either. or they are going off in fasihionable directions.

given global politics i am not efven sure we as a population will all have the nominal democratic channels in a few years. if we don't use them we will quite possibly lose them.

oh, but you cannot argue against caution and strategy, now, can you? so you can't go wrong advocating caution and strategy. nobody will arguye against you. because everybody agrees with that. so we go around cautioning one another. "maybe the perpetratorss will ...." panic. fear.

or saying "they will launch an investigatgion when all the perpetrators have died and then nothing willb e done". resignation.

or saying "we are making progress. slow and steady wins the reace." status quo bias.

there are posts from many years ago or so where members of community said things like they'd just have fun with their full and varied life until then.

they p0redicted we'd have treatments in a fwe years. from THEN. literally.

does whitney [i keep using him because he uis one of the few who everybody knows about] have a full and varied life? this is a disconnect.

i have often argued caution and strategy for the past who knows since idk 2003 or something. the xmrv mess had a bunch of grabby "me first" types.

but you /can/ argue against stasis. and we have stasis. the public respects those who fight back. i fear stasis most.


next

we have improved on the whole severity levels not understanding one another thing ever sicne we realized oxford wasn't the only problem. and also as a side efffect of just realizing things like causation tendentiousness was getting us nowhere.

but we are still unknowingnly ostracizing.

many severe are *truyly* alienated by our community.

and the mildest don't think the community is for them. and many feel like they don't belong.

so we have a modal sensibility. i don't hkn most in the community realize just how alienated many severe are.

the modal sensibility is in between.

so what to do:

embrace and welcome and educate the mildest. even thouse who are not sure if they meet good definitioins. yes, uincluding smoe of the ones the community used to metaphorically spit at by calling them tatts. welkcome and educate them.

they need the phds in m.e. ology that we have. they also need to kow about disease progression.

most have no idea of what severe looks like.

some of them have the disease and will find that out in a few years. emily collingridge started out mild.

remember our poll on disease courses? i followd that poll over time. the progressive courses kept rising as respondents realized they actuyally were progressing after all. at first they thought they weren't!

nobody knows who is goign tog et sicker., everybody is one exposure from getting wore.

acknowledge the existence of severe with complex presentations. acknowledge that they are not contributing tot he discussion for health reasons much and are therefore invisible from the community.

THEREFORE their ideas their knowledge their needs their presentations are invisible. what do you think this does to the modal attitude?

it leads to things like the mea piece. seriously.

we cannot educate the public if we cannot educate one another.


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the 4 points i wrote in my primal scream [not taht the post you are reading now isn't aonther primal scream but still]:

1. fix the characterization. it is not an activity-related set of hangover symptoms including a presumed pathognomon. definition does not equal characterization.

what sympotms do severe have? find out. you are qyite possibly one exposure form having those. or in a coupl years. what is the NUMBER of symptoms? this matters. even merely meicc portrays a complex disease.

start with reality and get it across. do not start with public perception and try to fix it. do not say "it is not X". say "it is Y." like hiv/aids, ms, sle.
2. convey our history, our compelling fight, and the history of misopathy
3. big things and faithful steps that lead to big things -- follow
all democratic channels including legal route
4. fight back. do not cower. this above all.

https://www.s4me.info/posts/194070/


next

i have run out of steam. had a few more points. whatever.


i might delete this post. i would prefer you not quote it. thanks.

 

It’s a good post @Samuel - don’t delete it. I get your points about the severe too. Any of us could go there - we just don’t know what’s round the corner for any of us.

 

I also think you shouldn’t delete @ Samuel. Your posts are spot on.

 

In reply to Samuel. Thanks for your comments Samuel , I have only read half as it’s long for me , but will comment in reply to some of your points on that first bit.

I agree regarding the charities issue. However I don’t think its just about not understanding /as In unaware. That was my belief when I started commenting on their Facebook a few years ago , I thought that there just hadn’t been enough severe ME input, with many dropping membership after a few years etc, for them to really see the community or understand the needs so I started commenting regularly. I realise I’m probably an irritating repetitive voice who People after a while might just zone out, but I also saw that regardless of what people said it remained the same .

I think that i remember In a magazine many years ago Dr Charles Shepherd stating he had some tube-fed patients personally, he’s a dr too, and Also visited the old severe ME ward in queens so yes they/he has met the worst but It didn’t make them put the worst as a priority or anything.

Since rjf leading media recently, Mea DO. now “show” the reality of severe ME more and they fund one study, the biobank also includes severe in general research and they have upgraded their previously woefully lacking literature but I still feel It’s a Bit tokenistic and they sort of followed the move in the world community with Whitney Defoe publicity etc rather than led on this. I had the same feelings as you about the recent article but in the same issue bizarrely apparently was an interview with Merryn Croft’s mother! It’s really approaching on a more superficial level severe ME that allows that discord afaic.

I think that there are many issues around MEA and other U.K. ME groups compared with the successful advocacy group I detailed above eg lead by 1 person essentially; not seeking community involvement; not looking to expand; having a like it or lump it attitude to their direction; a very small group of trustees who have been the same for years/ decades and a fundamental lack throughout most of that Time of engagement/ care for the very severe. Obviously being an advocacy group on an issue with much sympathy is different to a small group trying to do research, media, information for a derided illness etc but perhaps they could have grown more rounded and broad shouldered?

Ofcourse there are many who regard MEa information service and support as saving them but The attitude with most criticism is you’re lucky we are doing this work at all, don’t like it set up your own charity. I do think having trustees where the main one with severe M E personal experience is NH who’s attitude we have seen, is a problem. Mea might argue that the severe have their own 25% charity, but that’s a cop out afaic ...

I agree with the reacting only ticking along feel of the charities too. I don’t think this is Even them just copying other charities because from my own following of MS, Parkinson’s and Alzheimer’s I’ve seen more campaigning, and MS in fact seems to have a rolling campaign system so when one ends they ask members for suggestions for another. This is starkly lacking from our top 2. But as you say we are in extraordinary situations so ours should be more radical, more pro active And less cushty with the establishment than others. The collaboration with the MRC in particular , I think was the grave error of the past 2 decades, the desire to collaborate and aversion to campaign and challenge very much (acknowledging the pace Petition of 2005 & the nice petition of 2017).

I agree, yes there could be more dynamism & Social Media exploration/ modern “act -up” tactics, & it’s a shame that #MEAction activities were IMO essentially buried rather than embraced as a radical advocacy wing. Younger people “with the know” could be being recruited into the older main charities most run by quite aged, single figureheads (MEA , Tymes, meruk,& 25%). #MEA were trying to do this but it hasn’t flown in the uk to the heights we need.

I realise what I’ve said is MEA focused when I’ve been specific but AFME are so off the plot it’s hard to even discuss them as serious even though they are the largest charity. As you say they seem to be working to a two. century time frame and are chiefly about supporting & self managing CFS.

Most charities due to the nature of Them and with a small team at the top, are going to be hard to change now. Many might change as the leads retire. Dr Charles Shepherd is right to say we will struggle to find a dr to work for our charities but I think that that with new leaders & potential to merge, there will be opportunity for more inclusion and radicalism. There have been a few attempts to set up alternatives but not successful.

Perhaps we as a community should discuss what we’d like to see as a national major charity which could be for adults kids & the severe combined, which fulfills need for information, support and research facilitation but also campaigns. I think that the reaching to volunteers and expertise within the community, at a level manageable to the person, could give us a charity with expertise on advocacy, PR, media, campaigning etc as well as what is there already. I think that we now Could be about much more goals and success and achievements instead of “one day we will get there “ but I understand that for the charities in the 90, 00s how much individuals must have got worn down by the establishment walls. ..

 

article here

https://www.meaction.net/2019/08/27/nice-drag-their-feet-on-stopping-the-harm-caused-by-get-and-cbt/

 

also in Scotland
https://twitter.com/user/status/1167826799960702976

https://twitter.com/user/status/1167826802867204096

https://twitter.com/user/status/1167826808814915584

https://twitter.com/user/status/1167826811855597570


write up by AfME
https://www.actionforme.org.uk/news/me-charities-come-together-for-better-care-in-scotland/

 

Hi Cinders, sorry what interview was this? I don’t recall my mum doing any interviews for MEA in a very long time? I’m just intrigued as to what they’ve put as I can’t think what it could possibly be. They asked if they could use Merryn’s image after using it accidentally without realising it was Merryn and we asked them to write something to go with it as we was unhappy with what the image was being used for and asked for it to be placed differently (they placed her image next to a statement saying many sufferers have committed suicide and whilst this is true, is not true for Merryn and was very upsetting. They accepted that mistake and made the changes we wanted them to.) That is the only thing I can think of, or a piece she wrote about things not having changed since Merryn’s death for ME sufferers. If it was different to either of these things, please can someone let us know so we can email them. I have tried to look but can’t seem to find anything.

Many thanks, Amy (Merryn’s sister)

 

Hi Amy I think i Saw others say it, I don’t get the magazine myself. However originally I saw it here in the summary of what was in the August issue when I first saw the NR article, it says

https://www.meassociation.org.uk/about-the-mea/me-essential/

so I think that that fits in with what you said you knew of: so maybe not an interview, sorry if I’ve mislabelled it and worried you.

 

Brilliant, thank you for getting back to me