tag:blogger.com,1999:blog-38372827.post1223442888419415893..comments2023-09-19T03:46:20.508-07:00Comments on Peggy's Blog: Unknownnoreply@blogger.comBlogger25125tag:blogger.com,1999:blog-38372827.post-63761422841330592382020-07-07T18:42:00.409-07:002020-07-07T18:42:00.409-07:00Hi it's laa! 9 months ago my doctor told me I ...Hi it's laa! 9 months ago my doctor told me I was diagnosed with HSV2. I was heart broken, However that same month i found a Dr. who helped me to cured the virus with natural herbal treatment permanently. thanks to Dr. omohan for his natural herbal treatment that eliminated this virus out in my body forever. his contact information for any incurable virus via; dromohanherbalmedicine@gmail.com or whatsapp him or call him through his phone number +2348164816038. Veronica Forbshttps://www.blogger.com/profile/00604816965596974878noreply@blogger.comtag:blogger.com,1999:blog-38372827.post-55551008164362047202017-10-05T11:04:42.014-07:002017-10-05T11:04:42.014-07:00I am Sophie from Canada, I once suffered from a te...I am Sophie from Canada, I once suffered from a terrible and Chronic fibromhyalgia,since i was bone , the doctor told me there was no permanent cure i was given medications to slow down its progress, i constantly felt my health was deteriorating as i constantly had Painful menstrual periods,this ailment was really terrible especially when am going out with my friends, i have this constant disorder for about 31 years, this was really a terrible ailment ,on thin one day that i was going through the internet,and i came across a post of Mrs jessica on how his daughter was been cured from fibromhyalgia through the help of Dr Williams herbal product, I contacted this herbal doctor via his email and explain everything to him and make purchase of his product,few days later he sent me the herbal medicine through courier service, when i received the herbal medicine, i used it for 1 months and two weeks as prescribed by dr williams and i was totally cured within those week of usage,on thin now i have not experience any sign or characteristics again . for more information you can email him on drwilliams098675@gmail.com for helpSophie Lewishttps://www.blogger.com/profile/05413833542996933787noreply@blogger.comtag:blogger.com,1999:blog-38372827.post-37815082013488464412016-05-18T05:03:12.727-07:002016-05-18T05:03:12.727-07:00In Amnesia disease people loss their complete memo...<br /><br />In Amnesia disease people loss their complete memory. Memory loss can be of few months early or can be some decades. There are many types of amnesia disease and many types of solution are there but which one for you, you can't determine. We provide you the best <a href="http://homeremedies9.com/common-remedies/home-remedies-a/amnesia-home-remedies/" rel="nofollow"> Home Remedies For Amnesia </a> which is easily usable and no any side effects. Try it for great response.Anonymoushttps://www.blogger.com/profile/14171444716665639227noreply@blogger.comtag:blogger.com,1999:blog-38372827.post-10149896206636585522011-09-22T10:19:57.849-07:002011-09-22T10:19:57.849-07:00Hi Lee, Please do feel free to forward my blog to ...Hi Lee, Please do feel free to forward my blog to Democracy Now -- and great idea about approaching them.Peggyhttps://www.blogger.com/profile/01076379368835293822noreply@blogger.comtag:blogger.com,1999:blog-38372827.post-4156084606803713082011-02-27T21:35:05.025-08:002011-02-27T21:35:05.025-08:00Wonderful post. I completely agree. It's disg...Wonderful post. I completely agree. It's disgusting that it's come to this, and our health will be endangered by being more active, but we have to do something, anything to get the attention we need to get the medical attention we need!! We will not take crumbs! ACT UP!!!Justinhttps://www.blogger.com/profile/16661093224060056052noreply@blogger.comtag:blogger.com,1999:blog-38372827.post-13817518093932575852011-02-21T17:10:04.417-08:002011-02-21T17:10:04.417-08:00As soon as I read this article, I thought: "B...As soon as I read this article, I thought: "Bed-In." It looks like some other people thought the same thing. I'm bedridden right now, but if my condition improves, which does sometimes happen, I would try to make this happen. I imagine beds and quilts in front of the CDC, a lot of literature, a lot of visibility, lying there until they take us away. <br /><br />I wish I had been more aware of us as a community before I got too ill to do anything out in the world. I do think we are gaining visibility.<br /><br />One passing thought I had: Democracy Now! takes submissions for story ideas, and I think they might be really interested in us if we present it well. If I write them, Peggy, do you mind if I refer them to your website? You are eloquent and passionate.<br /><br />Thank you for the inspiration.<br /><br />Lee.Leehttps://www.blogger.com/profile/07598902383588588136noreply@blogger.comtag:blogger.com,1999:blog-38372827.post-73510280475858127042010-11-18T08:17:29.612-08:002010-11-18T08:17:29.612-08:00Absolutely "We need to get the fight out of t...Absolutely "We need to get the fight out of the computers and on to the streets!" Everybody is preaching to the choir. Forget "advocacy"; DECLARE WAR on the CDC and focus your wrath outwards where it will do some good.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-38372827.post-23665154525301073972010-11-12T21:08:03.876-08:002010-11-12T21:08:03.876-08:00For those who want to take simple action now, chec...For those who want to take simple action now, check out: www.theexitproject.org -- click on the "Groundswell campaign" on the right column to participate. And please volunteer to help with the website! <br /><br />We need a global community, so I hope everyone who responded will join in!Peggyhttps://www.blogger.com/profile/01076379368835293822noreply@blogger.comtag:blogger.com,1999:blog-38372827.post-8464798507982806372010-10-28T17:24:32.683-07:002010-10-28T17:24:32.683-07:00Even though I've been sick with ME for over 13...Even though I've been sick with ME for over 13 years now, and am desperate to get well, where is the proof that XMRV or the other MULs are the cause of ME?<br /><br />I think we should find out first, before possibly making fools of ourselves.<br /><br />I respectfully and especially disagree with pancho's statement:<br /><br />"Our slogan can be XMRV affects EVERYONE and is as deadly as HIV/AIDS."<br /><br />We don't know that at all! Ten times as many healthy people have XMRV compared to people with ME, and they're full of energy. <br /><br />It may be a retrovirus, but that doesn't mean it is as deadly or even as disease-causing as HIV.<br /><br />And to 'anonymous' above, HIV patients were in fact "dropping off the perch" until effective drugs came along. It is a myth that some folks live with HIV for 10-12 years without getting sick. A MYTH. Maybe 10-12 months, but that's it. I've been to the wall.<br /><br />I know you mean well Peggy, but I think a demand for more research in general is the way to go, rather than proclaiming XMRV is the sole cause.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-38372827.post-61425041876904169482010-10-15T06:39:28.355-07:002010-10-15T06:39:28.355-07:00Loved Zac's idea - thanks for the visual, it m...Loved Zac's idea - thanks for the visual, it made me laugh.<br /><br />Think the 10 second video and stringing them together in a ten min video etc - is a great idea.<br /><br />Also some hard hitting, gritty, alarming video - aimed at the healthy segment of the public - so it goes viral.<br /><br /><br />I have had the same thoughts as CHAI.<br /><br />Oslers Web reported that CFS broke out down the West Coast at the same time as AIDS. They called it little Aids. But the medico/research professions were not interested in little Aids, because it was just a bunch of women - and it was thought that it was more likely to be hysterics than anything real.<br /><br />HIV got the money because it was afflicting the under pinnings of the power base of Society: men and mens ability to have sex.Forget the women.<br /><br />People say - yeah but the AIDS patients were dropping off the perch. I say: seen the CFIDS memorial wall? Note the age and duration of illness - to date of death? Note any differences between that and the early days of AIDs. I dont. Some AIDS patients only lasted a short while after onset, and some lasted longer. The same pattern can be seen on that memorial wall. Go take a sobering look.<br /><br />The simple fact is, that women with this illness are so invisible and so irrelevant, that they dont even have the cause of death: ME & CFS end up on their death certificate.<br />Not acknowledged in life and not in death. We are dropping at the same rate as they did in the early days of AIDS - but like our illness - this too is conveniently hidden, so that we can be kept in our places. And of course what do we do? We comply like the good little women we have been taught to be. .<br /><br />And if we ignore the gender bias, then we leave them with the power to continue to do what they have always done: dismiss us.<br /><br />I am sure if you dug a little you would definitely see $research gender bias.<br /><br />Lets call a spade a spade and get on with it. Lets use the obvious prejudice to take back our power.<br /><br />Lets call in the sisters!They wont flinch from this fight.<br /><br />Anyone have Germain Greer's phone number?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-38372827.post-85714666667296588372010-10-13T20:53:43.166-07:002010-10-13T20:53:43.166-07:00Here's my take:
1. We hold a "lie down&...Here's my take:<br /><br />1. We hold a "lie down" in front of the CDC or NIH. Every person that can attend or send someone healthy to attend be there on a certain date and time. For everyone that can't be there they send a picture which gets blown up into a poster size that we stick on the lawn of the CDC by those lying down. That way EVERYONE who wants to participate can be represented.<br /><br />2. WE contact Michael Moore to come do a documentary.<br /><br />3. WE invite all media we can think of..tv, radio. talk shows.<br /><br />4. Our slogan can be XMRV affects EVERYONE and is as deadly as HIV/AIDS. (like breast caner affects EVERYONE, B/C EVERYONE HAS A MOTHER, DAUGHTER, SISTER, ETC)<br /><br />5. WE team up with Prostrate Cancer organization. It's been tied to both so let's use everything we can.<br /><br />6. That same day the ad goes in the Washington paper.<br /><br />7. WE create ONE COMMITTEE, ONE WEBSITE. ONE VOICE and put links on it to all the forums, blogs, causes, etc.<br /><br />We first have to put aside our CFS internal politics and actually join together. There are too many groups and forums, etc. to keep up.<br /><br />We can use Google Docs to create a list of people AND WHAT CITY THEY REPRESENT. THEN EACH CITY DESIGNATES 1 PERSON TO CHAIR THEIR CITY. THE CHAIRS OF EACH CITY HOLD A CONFERENCE CALL AND THEN REPORT BACK ON NEXT STEPS. I will take Ft. Worth.<br /><br />WE HAVE TO GET IT TOGETHER FIRST. Our website can be "I AM XMRV" and have faces representing every color, age, etc. etc.<br /><br />Who can help me start a website with links and a sign up sheet? I will do it!<br /><br />Or maybe someone knows a group of college students that could take it on as a class project? Imagine what they could put on their resumesAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-38372827.post-79839537334273071232010-10-12T16:31:43.258-07:002010-10-12T16:31:43.258-07:00Here's my big idea - a virtual wall of YouTube...Here's my big idea - a virtual wall of YouTube videos from CFS patients. The unique thing is that they would be all linked together, creating a never-ending video that would have impact because so many are so severely affected. <br /><br />First PWCs would make a very short (10 second?) video of themselves saying, for example, how long they've been sick, and how disabled they are. If they're lying in bed, or look really sick in some other way, all the better. <br /><br />Then, how to link them? There are a couple of ways to do this. The first way would be to have one person edit 50 or so of the short videos into one 10 minute video. There would be say 10 of these videos in total (with 500 people). Then each separate video can be linked either by a playlist set up by the editor, or by a video annotation with a link to the next video, or by a video response to the previous video. <br /><br />The other method would be to have no central editor, but to have each video annotated or "reponsed" to each other. I think one would lose viewers though as you would have to wait for each video to load. <br /><br />Then would would have some kind of press release, demonstration or something to bring attention that these videos are the web.caledonianoreply@blogger.comtag:blogger.com,1999:blog-38372827.post-59121060520850505242010-10-12T01:56:40.650-07:002010-10-12T01:56:40.650-07:00Thank you for a very good blogpost!
I totally agr...Thank you for a very good blogpost!<br /><br />I totally agree with you. We need to learn from the AIDS activists, but as others have mentioned we don't have the energy to march the streets or arrange other "happenings". <br /><br />The person who commented via email said: <br />"The problem now is that no one cares about us ME/CFS patients as a group, because we represent no particular oppressed subculture beyond the illness, and thus incite no political outrage beyond the disease itself to tap into to draw healthy people to our cause"<br /><br />I've been chewing on that one for some time and the only thing I can think of is "contempt for women".<br />In Norway there has been stories of doctors writing the letters SVBK on medical journals (before the journals got digitalized. The letters stand for (in Norwegian) Svie Verke Brenne Kjerring. Translated to English: Smarting Ache Burn Hag. This was how some doctors reacted to female pasients who repeatedly came to get help for, among other things, pain. <br /><br />If we could get the attention of the feminist movement (or whatever is left of it ;-) ) maybe we could get some help from them?<br /><br />Now some will say this isn't a womens disease, and they are right! My answer to that is: AIDS isn't just gay mens disease either, but it was the gay who started the fight. We need to get the fight out of the computers and on to the streets! Because we are not able to start marching ourselves we need someone else to do it for us. Feminists have the knowledge of how to change the world http://en.wikipedia.org/wiki/Feminist_movement<br /><br />Hope this made any sense. Sorry if my english isn't the best.<br /><br />Best wishes from Norway :-)Chainoreply@blogger.comtag:blogger.com,1999:blog-38372827.post-77253104096974302952010-10-11T20:06:39.328-07:002010-10-11T20:06:39.328-07:00Peggy, thank you so much for speaking for so many ...Peggy, thank you so much for speaking for so many of us who want to see ACT UP style advocacy. We do have a critical window of opportunity to influence our government, because of the connection established between XMRV and ME/CFS. <br /><br />I have been ill seven years. I could (and probably would) relapse severely after taking certain types of political action, as well as their possible, legal consequences. But I would hope for the best and take the chance, if I thought I was involved in a well-thought out, committed campaign to end our government's abuse and neglect of patients with ME/CFS. <br /><br />None of us want to be any sicker, but isn't that exactly what we will be if we can't change our government's mind about how easy and profitable it is to ignore us? <br /><br />I also believe that we need to make ourselves visible. So I am in favor of not only lying down, but chaining ourselves in place. Preferably to hospital beds we have rented for the occasion. It's much too easy to haul people away before they can have the press conference, otherwise. (Maybe there are logistically easier ways to make ourselves visible; but this is surely the most comfortable.)<br /><br />Yes, we have to get help and support from family members and friends, whenever possible. I'm sure mine will come and bail me out, if necessary. <br /><br />Kim DenerisAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-38372827.post-18779928853900395082010-10-11T07:50:39.592-07:002010-10-11T07:50:39.592-07:00Peggy,
This has got to be the most inspiring, t...Peggy, <br /><br />This has got to be the most inspiring, timely piece I have ever read !<br /><br /><br />For it feels like all we do, in the ME world, or in Khaly's Neverwhere, is just talking to each other.<br /><br />Oh, I'll post something on CoCure ...<br /><br />Oh, I'll say something on this or that discussion forum...<br /><br />And think I've done something.<br /> <br />Unreal, insular, desperately isolated - not just my wife and I after 17 years of this, but the ME scene - to me anyway.<br /><br />Talking, talking to who ?? <br /><br /> THIS though is good, this gets the blood flowing in the veins , the creativity roaring , again.<br /><br />Oh yes, we ACT UP : Videos, art, music.., Linda and me... Yes, there is SO much creativity, especially here in this awful place, that we have barely begun to tap.<br /><br />What works most I have to say, though, is SPEAKING UP. Going right to the very top, never ceasing to struggle, to demand, on an individual level, proper biomedical tests and treatments.<br /><br />That's such a long, lonely, path. It's a start ...<br /><br />Peggy your post will help keep me going.Holy Wayhttps://www.blogger.com/profile/04396731322033939255noreply@blogger.comtag:blogger.com,1999:blog-38372827.post-20068651725772111492010-10-11T03:43:01.309-07:002010-10-11T03:43:01.309-07:00I wanna send a couple of my old mattresses onto th...I wanna send a couple of my old mattresses onto the lawns of the CDC. Maybe drop them out of an airplane.zachttps://www.blogger.com/profile/15189027321961226572noreply@blogger.comtag:blogger.com,1999:blog-38372827.post-51744355465792846712010-10-10T21:31:21.814-07:002010-10-10T21:31:21.814-07:00Peggy great idea!!!
So we need to decide what we ...Peggy great idea!!! <br />So we need to decide what we are going to do, set a date, spread the word and then ACT-UP!!<br />We need people to help co-ordinate this.<br />Maybe call it a "LIE-IN", "LIE-DOWN", "BED-IN"? <br />For those who wont be able to make it to any public place we could set up a website so those people can log on and have a virtual "LIE-IN".<br />Friends, ME/CFSers, everyone lend me your ideas :-)<br />WestOzGirlAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-38372827.post-8279738097814002552010-10-10T13:28:47.749-07:002010-10-10T13:28:47.749-07:00RESPONSE TO THE COMMENT ABOVE:
You raise some exc...RESPONSE TO THE COMMENT ABOVE:<br /><br />You raise some excellent points, and when/if I can find the energy, I want to talk about how we can mobilize such efforts -- and by "we," I mean, all of us, and especially those of us on the far fringes, trapped in our beds and homes. I also want to commend the efforts already mentioned in the comments, and encourage people to participate in the activist efforts already in progress, however they are able. Here is a good summary of some of them:<br />http://lannieinthelymelight.blogspot.com/2010/10/advocacy-but-what-can-i-do.html<br /><br />On the topic of outage, however: it's true the outside world doesn't share our outrage, but some of this problem is due to misinformation. I am right there with you: getting revved up makes us sicker, even writing a comment makes us sicker, so how do we get things in motion? <br /><br />As someone who participated in ACT-UP, you have an invaluable piece to contribute. Please remember that while we can't use the exact tactics of ACT-UP, we can borrow from the principle that they *used what they had.* They had to really spotlight the problem of homophobia, and how it worked against those with AIDS, and some of this involved flushing out the bigotry, making it show its ugly face -- without this, I don't know that legions of supporters would have come along (as they had to be told how to *see* what the gay men dealing with both AIDS and homophobia already saw). I invite anyone reading this to brainstorm what this might mean for the homebound and bedbound: if people can get outraged about the Tuskagee Syphilis Experiment (which did not involve outright killing people, but denying them treatment as they lapsed into increasing pain and disability and ultimately died) then I actually do think there's a way to get people to share the outrage of this quarter-century horror many of us have lived. <br /><br />Yes, our invisibility works against us, as homophobia worked against those with HIV/AIDS: but they did use that in their favor, and this was genius marketing and activism. <br /><br />At this juncture, we need those AIDS activists -- they know the ropes, and progress could benefit both groups. I encourage you if you're able to look up any ACT-UP folks you worked with in the past, and tell them we need them. <br /><br />Have faith -- if you saw what you saw, you undoubtedly saw seemingly hopeless patients pulled out of the grave and given life again. We can get there. <br /><br />PeggyPeggyhttps://www.blogger.com/profile/01076379368835293822noreply@blogger.comtag:blogger.com,1999:blog-38372827.post-70139010676031652232010-10-10T13:25:27.431-07:002010-10-10T13:25:27.431-07:00I want to post this comment that was sent to me pr...I want to post this comment that was sent to me privately, but the writer was not able to post:<br /><br />A READER WROTE:<br />-- <br />my comment:<br /><br />Right on, Peggy!<br /><br />Fully agree, and have suggested the same to others many times. I did ACT-UP demonstrations, actions and organising in Los Angeles in the late 1980s/early 1990s, so know first hand of what you speak.<br /><br />But our problem as patients is that most of us are just too sick. I am. I've had four multi-month crashes in the last year after exertions that would be trivial or common for healthy people. I can't rev up the internal engines in any way anymore without risking weeks of bed-bound, mind-jumbled relapse.<br /><br />Peggy, what can we do? ACT-UP got loads of healthy people onto the street because, as we who were there know so well, we were indignant, enraged, at the vicious homophobia of society's neglect and hostility towards AIDS patients that left our brothers dying without care or cure. The way AIDS patients were abandoned by medicine and government was like every whiff of society's anti-gay hatred writ large - and damned if we were going to let that go on without a fight - and fight we did.<br /><br />The problem now is that no one cares about us ME/CFS patients as a group, because we represent no particular oppressed subculture beyond the illness, and thus incite no political outrage beyond the disease itself to tap into to draw healthy people to our cause. And we who are ill and most outraged, are at the same time the least able to rise up and fight on the streets as ACT-UP did so marvelously back then.<br /><br />It takes everything out of me just to write these three paragraphs, will be wiped out for the rest of the day, or more, now. Any thought that I could rise up and contribute to protest like in ACT-UP days is hopeless. Peggy, you are absolutely right that we must emulate ACT-UP's fighting tactics, but how with these bodies and minds so crippled by this cursed illness?--Peggyhttps://www.blogger.com/profile/01076379368835293822noreply@blogger.comtag:blogger.com,1999:blog-38372827.post-38190780177885099662010-10-09T16:31:19.117-07:002010-10-09T16:31:19.117-07:00Incredible writing and history! Many of the 'n...Incredible writing and history! Many of the 'newbies' to ME/CFS need to read this!<br /><br />Us oldies are ready; we are going to use every bit of our energy to act up and act out! The videos people are making of themselves (go, Rivka!) in front of government buildings is just the type of thing we need; the Ad coming out in the Washington Post via the ME/CFS Worldwide Patient Alliance will inform the public of the danger they are in, of the desperation of the lives of our silenced patients, of the civil rights violations by the DHHS, NIH, and CDC, and of the demand for immediate clinical trials for any patient diagnosed with ME,CFS,XMRV+ and others with NeuroEndocrineImmune Disorders (NEIDs).<br /><br />You can help:<br /><br />www.causes.com/causes/511536<br />www.mcwpa.org<br /><br />Be a part of history!<br /><br />I am not touting "my own efforts"...I am telling you about something that is by the patients, for the patients and their families, and supporters. <br /><br />Peggy, you have given an invaluable lift to me and the rest of our community, and I hope every person who will be attending the CFSAC will take a camera and signs and camcorders and act out in front of the building before you enter it, at lunch time, on breaks, etc.!<br /><br />Bless you, Peggy!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-38372827.post-13285474844953932822010-10-09T16:07:02.095-07:002010-10-09T16:07:02.095-07:00Thank you, Peggy! This is so exciting! We who su...Thank you, Peggy! This is so exciting! We who suffer from ME/CFS are tired of being ignored. Your ideas are wonderful!<br /><br />Patricia Carter<br />www.mecfsforums.comWildaisyhttps://www.blogger.com/profile/06367939092107380380noreply@blogger.comtag:blogger.com,1999:blog-38372827.post-60458489931835001782010-10-09T11:51:44.514-07:002010-10-09T11:51:44.514-07:00Peggy: Thank you for this incredible blog.
Dear ...Peggy: Thank you for this incredible blog. <br /><br />Dear Dr. Fauci: No, I won't kill myself. No, I won't shut up. And no, I won't use my inside voice. <br /><br />p.s. FUCK YOU, FAUCI.Unknownhttps://www.blogger.com/profile/07680643675806830360noreply@blogger.comtag:blogger.com,1999:blog-38372827.post-77765596366709338192010-10-09T10:58:38.139-07:002010-10-09T10:58:38.139-07:00Welcome to Sock It 2 ME/cfs: http://www.sockit2mec...Welcome to Sock It 2 ME/cfs: http://www.sockit2mecfs.org/ <br /><br />We could use some well people to help. AIDS sufferers didn't do it alone. Their healthy lovers and friends and neighbors pitched in to help raise a ruckus. <br /><br />Let's see some community!Creekhttps://www.blogger.com/profile/06145185297188783266noreply@blogger.comtag:blogger.com,1999:blog-38372827.post-71815787609151783972010-10-09T10:55:30.396-07:002010-10-09T10:55:30.396-07:00Perfectly said! The CFS community at large has su...Perfectly said! The CFS community at large has suffered oppression for a long time. We were just talking about the "Stockholm Effect" amongst a few of us, and how hard it is to break out of that pattern. Now is the time, the time is now. We actually have the upper hand, we just need to get moving, get busy, and seriously act up.<br />Thanks for this, Peggy.Khaly Castlehttps://www.blogger.com/profile/11225321930336123939noreply@blogger.comtag:blogger.com,1999:blog-38372827.post-49149007338798658852010-10-09T10:13:36.855-07:002010-10-09T10:13:36.855-07:00Excellent blog, Peggy!
YES, we can and should ACT...Excellent blog, Peggy!<br /><br />YES, we can and should ACT UP!<br /><br />We can't do it in the same manner as the the AIDS community did, but we can adapt their tactics.<br /><br />Why not Lie-Ins? Even a few people with sleeping bags and comforters lying down at critical places, preferably where the press is already expected to cover another story, would have an impact.<br /><br />ME/CFS patients are a creative bunch and angry enough to come up with some great ideas.<br /><br />We don't have a quilt, but we are working on banners of socks (the Sock It 2 ME/CFS project).<br /><br />And I bet other ideas (and actions) are coming.Liz Willowhttps://www.blogger.com/profile/11224204717888883351noreply@blogger.com