An idea on how ME/CFS patients can create mass street demonstrations — and not over exert ourselves

[Little Bluestem]

One idea I had was to focus on a few major newspapers, and then every day for week, or even a month, ME/CFS patients could post mini articles and statements about ME/CFS in the comments section of those newspapers, for every single article that the newspaper published, not just in the ME/CFS articles. This would mean that everyone reading the newspaper would have a good chance of seeing those statements.

I think quite a few people would consider this trolling and be angered by it and thus at ME patients. Do online newspapers have a 'letters to the editor' section? This would be an appropriate place to put short articles about ME. Perhaps on ME Awareness Day they could be persuaded to publish an article about ME for free as a public service.

 

[Little Bluestem]

Most do not have wheelchairs as good as that idea would be if lots with wheelchairs could do it.

Wheelchairs can be rented in the US. I don't know how many people could afford to do so. Some pharmacies rent medical equipment. The pharmacy where you do business might be willing to loan you a wheelchair for a day for an advocacy event.

 

[taniaaust1]

Wheelchairs can be rented in the US. I don't know how many people could afford to do so. Some pharmacies rent medical equipment. The pharmacy where you do business might be willing to loan you a wheelchair for a day for an advocacy event.

I have my own wheelchair but I think its things like that which put people of off protests as most wouldnt want to rent a wheelchair just so they can safely protest.

 

[taniaaust1]

@myshkin, you are presenting a completely distorted and incorrect picture of what happens in rallies raising awareness of medical conditions. Do you really think that for example the police are going run in and beat up all the people walking to raise awareness of breast cancer in these walks taking place in 8 cities this year and next!

I agree the UK poster, there is far more negatively put out towards ME/CFS in England. Just look at all the publicity which went on over ME/CFS patients threatening Dr Wessely. He just easily made ME/CFS patients sound like loonies who were putting his life at risk and the newspapers picked up that story and tried to it sound like all ME/CFS patients were like this and out to get him. The media stories about us as a group were shocking!

It would be so easy for any protest over there in England to go wrong and be twisted by those like Wessely and the media.

I myself have twice suffered from violence coming from authority.. a policeman once tore my shoulder tendon.. he grabbed me for no real reason and pulled my arm up behind my back and ripped things (he didnt pay heed at all that I was physically disabled and frail cause I dont look it). I couple lift my arm properly for 18mths after that incident. (and I wasnt even able to find out if that policeman was disciplined over it after I did an official complaint and sent my ultrasound scan to them showing what had been done.. as they just sent it to their legal team to protect themselves).

Another time I collapsed and had a security guard actually tread down hard on my head trying to make me move out of an area, he wouldnt believe me that I couldnt get up! (note this could happen to someone at a peaceful rally if police want someone moved on and dont believe the person cant move out). These two things happened to me in Australia in which ME/CFS isnt nowhere near as badly looked upon as England.

People do not view ME/CFS patients in the same light as breast cancer patients.. and if a rally is causing any problems at all for others (eg a blocked street), who knows how other people will react. I do actually think if others who have ME witnessed a collapsed ME person having their head stepped on, it could well lead to a group of even ME protestors who are very sick.. really going off. (I know I couldnt stand there to witness that.. I'd be out of the wheelchair, dangling from a coppers arm trying to get them off of the collapsed person).

Yes a group of sick patients who arent causing issues should be treated well.. but for me, I myself havent found that to always be the case. Lots of people dont even believe ME/CFS people are actually sick.
.........

Im not at all against rallys or protests and do think we need them but I dont think we'd be unlike any other group if we saw great unfairness happening at such a rally and wouldnt allow abuse to occur just cause we are so sick. and there is always a chance esp in some places of the world eg UK in which those who have ME may even be purposely provoked (I swear Dr Wesselly has tried to do this at times with the ME community and the media).

 

[taniaaust1]

Car based protest, and truck based protest, has a long history in Australia. If I recall accurately its usually done with a very slow moving cavalcade ... it doesn't stop, but clogs traffic in key areas. Moreover they often, again if I recall correctly, ask people who support them to honk their horns.

Its not just not being able to afford cars though. Many of us cannot drive - in my case I know how, but I am too sick to drive. One sanction that might be used is also to reevaluate our licenses, and suspend them etc.

A discussion a few years back here on PR suggested something similar to the hands used in breast cancer protests, each one with a name attached. I would suggest wheelchair cutouts instead. These can be stuck to vehicles, or stuck into soft ground on sticks, or stuck to objects. Each one represents someone who wants to be there but cannot be.

As Alex said, we have had quite a few different protests by cars and some big ones by trucks here in Australia over various things and these do get good public support (lots of postive friendly tooting from the general public to show support). Thing is they tend to usually drive along a set route into the city and past parliament and then back out the city. The media tend to get well involved with these letting people know about them before hand (so people can avoid the protest if they wish and not be caught up in the traffic).

A ME/CFS one could work well in that way but one would need the media involved and Ive found its a nightmare to try to get the media to show any interest in our illness. If there couldnt be gathered media support and enough people, the rally would basically go practically unheard about.

 

[taniaaust1]

The "mass demonstration" relates to trying to attract a large set of attendees; in other words, trying to come up with a public manifestation concept and format that enables and attracts a good number of ME/CFS patients to attend.

Mass numbers of attendees would have a much higher impact than a handful of patients, so a high attendance is important.

I dont think people should underestimate the efforts of small groups of ME/CFS patients protesting either at places where they will gain attention. We have had handly any at all of that go on and its something we are needing happening too.

I know in Australia, Ive seen very small protests of things at times make the news.. eg say 20-30 people protesting outside of parliament house often can make the news depending on what it's about. When I protested/demonstated alone at a medical conference, I think I did make impact (I was just too sick to follow throu thou with the window I'd opened up with the protest). So I believe small groups could really impact things too if the right place to do this and time has been thought out well.

It doesnt matter what kinds of rallys go on..large or small.. we just need these if we want things to change sooner rather then later.

I also think we need to engage with the more healthy section of the ME/CFS community. There is a huge variation in the severity of this this disease, and while there are those with ME/CFS who are bedbound or housebound, others with ME/CFS are fit and able enough to work, albeit with great difficulty. It's these more healthy ME/CFS patients that should be capable of attending a public march or demonstration. So we need to get the more healthy ME/CFS patients interested in this advocacy.

Good question.. how do we get those ones involved? The things is those with mild ME/CFS, many of them do end up recovering I think and then just want to forget about how they were and this illness. (It was like that when I went into remission for 2-3 years even thou I'd previously been severe.. I wanted nothing anymore to do with all this, I didnt even want to remember how sick I had been. I wanted it completely behind me). To go and rally at that point, I'd be thinking it could make me jinx myself.

 

[MeSci]

The things is those with mild ME/CFS, many of them do end up recovering I think and then just want to forget about how they were and this illness. (It was like that when I went into remission for 2-3 years even thou I'd previously been severe.. I wanted nothing anymore to do with all this, I didnt even want to remember how sick I had been. I wanted it completely behind me). To go and rally at that point, I'd be thinking it could make me jinx myself.

Another problem is that if the public see predominantly mild sufferers they may think "Oh, it doesn't look that bad" and carry on trivialising the illness.

 

[MeSci]

I think quite a few people would consider this trolling and be angered by it and thus at ME patients. Do online newspapers have a 'letters to the editor' section? This would be an appropriate place to put short articles about ME. Perhaps on ME Awareness Day they could be persuaded to publish an article about ME for free as a public service.

Do you mean spamming rather than trolling? Trolling is the deliberate and devious sport of provoking people, usually with hurtful personal remarks, and is a particularly nasty form of 'flaming'.

 

[Hip]

I think quite a few people would consider this trolling and be angered by it and thus at ME patients. Do online newspapers have a 'letters to the editor' section? This would be an appropriate place to put short articles about ME. Perhaps on ME Awareness Day they could be persuaded to publish an article about ME for free as a public service.

Yes, you are probably right, it might be seen as irritating spam. I was just trying think what might be the internet equivalent of a street march or demonstration.

 

[Hip]

I dont think people should underestimate the efforts of small groups of ME/CFS patients protesting either at places where they will gain attention. We have had handly any at all of that go on and its something we are needing happening too.

I know in Australia, Ive seen very small protests of things at times make the news.. eg say 20-30 people protesting outside of parliament house often can make the news depending on what it's about. When I protested/demonstated alone at a medical conference, I think I did make impact (I was just too sick to follow throu thou with the window I'd opened up with the protest). So I believe small groups could really impact things too if the right place to do this and time has been thought out well.

You certainly have a point there.

Perhaps large numbers of ME/CFS patients may not be necessary for a ME/CFS demonstation. It may be the format of that demonstration which is more important, ie, what the placards say, and any type of imagery and visually or emotionally memorable themes.

 

[Nielk]

The main point of demonstration is attention getting via media. If we have no media coverage, it will be buried away with only the attention of the patient community which is already aware.

We need a wake up call to the world. We need to think of a way to be media worthy.

 

[taniaaust1]

Another problem is that if the public see predominantly mild sufferers they may think "Oh, it doesn't look that bad" and carry on trivialising the illness.

Yeah, I worry about that one too... "look at those stupid people who are supposed to be tired, they have the energy to protest" (I can imagine people thinking that).

This is why I think we need our sickest at rallies, ones people can see are very sick, the wheelchair uses and the basically boundbound, throw in some on ozygen and on drips too. Its probably the only way to get the media more involved and start standing up for ME/CFS, the media arent interested in "tired" people.

And the only way the very sick can join is if others help get them there and support them while there, quite possibly the ME community needs to form little groups working closely together to enable that to be able to happen. The very sick can not drive! They can not look after themselves well when out! They need others helping them do this and most do not have the family support to be out helping them to protest.. we run our carers into the ground as it is. I really do think the ME community needs to work together better to enable protests (even small ones) to be happening so the general public can really see what ME can do to people.

 

[Little Bluestem]

Do you mean spamming rather than trolling? Trolling is the deliberate and devious sport of provoking people, usually with hurtful personal remarks, and is a particularly nasty form of 'flaming'.

Spamming would be a better term.

 

[ricericerice!]

I think protesting is simply physically to hard for many, by the time many have got out of bed, had breakfast, got dressed and got out of the house, many are already exhausted.. I could only do lay in protests.

yes, this should be just fine, we really want the public to see the extent of our disability. a "lie-in" would be okay, or a "funeral-in" as the AIDS patients did, as severe ME is a kind of living death.

And the only way the very sick can join is if others help get them there and support them while there, quite possibly the ME community needs to form little groups working closely together to enable that to be able to happen.

hm I remember saying this previously on this thread, but it didn't seem to get much traction. but you are correct.

I think there is enough activisim and hashtags and shit like that on the internet to go around; what we need is for people to see us now.


if there's still any interest, I'd like to hold an IRC chat with those of you who shared there ideas here.