tag:blogger.com,1999:blog-4895604594896814289.post3346577949417326298..comments2023-08-20T01:37:48.791-07:00Comments on CFS Patient Advocate: Voices from the Shadowsconsuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.comBlogger17125tag:blogger.com,1999:blog-4895604594896814289.post-43374681146653912582014-03-05T04:36:48.163-08:002014-03-05T04:36:48.163-08:00the gupta amygdala retraining has an explanation ...the gupta amygdala retraining has an explanation of cfs and is on dvd homecourse for recovery many ppl have recovered from it he had cfs and now well free video online youtube also that's why u cant handle light noide chemicals as the stress response is swithched on by amygdala is brain as primary source but it can goon to create a lot eles wrong with body leading pple to belive that's the original course , the dvd course is very beliveable , has helped me a lot and wil change ur life xgodwilllingxalso the lightning process help me a lot too a person can come to your home if bedbound /houdebound xxhope this info helps pplexxxxxxxalways keep energyinreserve and be sensible and calm <br /><br />hananoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-64547841517485028562012-03-28T04:37:40.221-07:002012-03-28T04:37:40.221-07:00Hey, nice site you have here! Keep up the excellen...Hey, nice site you have here! Keep up the excellent work!<br /><br /><br /><a href="http://www.mdcovered.com/transcription/why-us" rel="nofollow"> Patient Appointment Scheduling</a>Nallihttps://www.blogger.com/profile/14584196074976791777noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-26251478847724413212011-11-13T19:40:27.040-08:002011-11-13T19:40:27.040-08:00I think this film is a great undertaking. I'm...I think this film is a great undertaking. I'm sure it will help spread the word on how devastating this disease is to sufferers and their families.<br /><br />As someone whose 26th anniversary with this disease is soon, I personally can't see this film. It devastates me just to read about the suffering and the continuing existence of CFS-deniers, while people's lives are denied by an indifferent, at best, hostile, at worse, medical establishment.<br /><br />Thankfully, some doctors have been enlightened and are doing the right thing. Right now, Drs. Fluge and Malle are in the forefront, and some here are, too. <br /><br />I'm betting on the Norwegians medical team and those here in the forefront of scientific research on CFS.kathy d.noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-3609068072984036482011-10-12T12:52:56.833-07:002011-10-12T12:52:56.833-07:00Sorry, should have looked here first:
www.faceboo...Sorry, should have looked here first:<br /><br />www.facebook.com/VoicesfromtheShadows<br /><br />"We should be able to put some of the discussion up on the website. Zoe Elton is the director of programming at Mill Valley who with her team has given us all amazing support in making this film visible."moigohttps://www.blogger.com/profile/02946269638167149052noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-20319702807274231242011-10-12T12:30:11.708-07:002011-10-12T12:30:11.708-07:00Thank you again, PA. Yes, a powerful film.
Would...Thank you again, PA. Yes, a powerful film.<br /><br />Would you or anyone reading this know whether a video or audio recording of the panel discussion following the MVFF showing will become available? Thx.moigohttps://www.blogger.com/profile/02946269638167149052noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-59172135988739903242011-10-04T15:58:12.146-07:002011-10-04T15:58:12.146-07:00I guess we all struggle breaking through the preco...I guess we all struggle breaking through the preconceptions when we talk to people. A film is a much more powerful tool for cutting through this. Great they made it and thanks for reviewing.<br /><br />I've found that in conversations concentrating on severity, suddenness and epidemics is the only thing that stands you a chance of cutting through the "tired" preconception. From experience I've found the following get active questions and at least some change of thinking:-<br /><br />- mentioning the specific date and day of week that my son caught his illness. Sometimes need to repeat this 2 or 3 times but I almost always get a sensible question that indicates some eye-opening<br /><br />- mentioning Lyndonville seems to wrk well also eg. "those poor kids - 40 or 50 that all got it on the same day and still have it now they're in their 40's"<br /><br />Just my tip....<br /><br /><br />Peter WPeterhttps://www.blogger.com/profile/13253264854441636266noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-25258315807184113512011-09-23T03:12:23.221-07:002011-09-23T03:12:23.221-07:00Too often clinicians see patients who are “half si...<em>Too often clinicians see patients who are “half sick”, patients that can actually get out of their houses into a doctor’s office - so that they do not get an entirely clear or full view. But what about those who cannot move -or cannot be moved? Who sees them?</em><br /><br />Whole surveys are frequently conducted on these people -- those able to get to the doctor's surgery or the "fatigue clinic" (of which there are a few in the UK, widely scattered, however adequate or otherwise they are). Recently a <a href="http://www.blogistan.co.uk/blog/mt.php/2011/09/20/the-human-and-financial-cost-of-me" rel="nofollow">survey was published</a> in the UK, partly funded by Action for ME, which found that the financial cost of ME for each patient was a third for women of what it was for men -- despite the fact that the illness affects women three to four times as much as men, and often much more severely. This really only reflects the gender pay and work gap, i.e. women had less, financially, to lose in the first place, but certainly does not reflect the level of suffering or personal loss the patients incurred as those most affected were excluded from the survey.Matthew Smithhttp://www.blogistan.co.uk/blog/noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-48069641898674859872011-09-22T18:40:25.953-07:002011-09-22T18:40:25.953-07:00Hi,
I appreciate this post but I would ENCOURAGE ...Hi,<br /><br />I appreciate this post but I would ENCOURAGE people with ME/ CFS to see this film, not so much because they would learn more or something new about ME/ CFS but rather because the better turnout and word-of-mouth an independent film has, the more likely it will be picked up and continued to be shown at various venues and, if we're very lucky, show up on mainstream film screens. So, even if you can't go, please encourage your friends, families, medical professionals, acquaintances to go. And if your local film fest has a contest for audience favorite or other category, vote for this film.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-62305594600731737292011-09-22T01:35:52.773-07:002011-09-22T01:35:52.773-07:00very nice..very nice..Easy Coolhttp://www.easycoolenterprise.comnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-7065640816049158272011-09-22T00:39:44.053-07:002011-09-22T00:39:44.053-07:00Looking forward to seeing this. Thanks for the rev...Looking forward to seeing this. Thanks for the review.cinderkeyshttps://www.blogger.com/profile/01578961959712679966noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-63548734600540531402011-09-21T21:16:39.071-07:002011-09-21T21:16:39.071-07:00After reading your review, I am eager to see this ...After reading your review, I am eager to see this film. You did a great job of describing what life is like for the very severely ill, and (more unusual) what life is like for their caregivers. I hope that all researchers will start using the new International Consensus Criteria, so that maybe they can get closer to the "core of the illness."Flohttps://www.blogger.com/profile/00565087657214691714noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-48370963134006401202011-09-21T19:04:17.920-07:002011-09-21T19:04:17.920-07:00Thank you for this review of "Voices from the...Thank you for this review of "Voices from the Shadows." I am hopeful that this film will help people to understand the real illness which is M.E. I am eager to see the film, and I am grateful to Natalie Boulton and Josh Biggs for making it.<br /><br />As someone who has suffered with M.E. for 25 years and is now homebound from the illness, I especially appreciate this: "More clinicians, more researchers should seek access to these patients to find out what really is happening in this illness. Even though the patients are sequestered in rooms, sophisticated, experimental tests can be run on them - involving, blood, urine, saliva and stool samples."<br /><br />This is true. I have little in common with people who can travel cross country or across the ocean and try all the new treatments. I have been sick so long that my body is now too fragile to consider many of the treatments which are available, and I can't even make it into a local doctor's office, let alone fly across an ocean.<br /><br />As always, I appreciate your insight and clear thinking, along with your facility for communicating.<br /><br />Patricia CarterWildaisyhttps://www.blogger.com/profile/03387587496317619866noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-59603086846364255612011-09-21T18:58:21.690-07:002011-09-21T18:58:21.690-07:00How many ME sufferers do not have 'caregivers&...How many ME sufferers do not have 'caregivers' - How many UK Neuro-ME sufferers have been abandonded by family and friends? Not only abandoned, but those family relationships and friendships have been destroyed at the deepest possible level as the friends and relations believe the medical establishment, and disbelieve their nearest and dearest who are sick, even as the ME sufferers are abused right under the noses of those who are supposed to care, who remain in denial.<br /><br />There are many more ME sufferers in the UK who are not in this film, who this film speaks for, who are in total abandonment, and total despair, in hiding from abusive medical treatment, in hiding from the NHS, who are still disbelieved, unknown because of disbelief, truly lost voices in the UK.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-41824508529473173942011-09-21T18:17:14.910-07:002011-09-21T18:17:14.910-07:00Thank you for this review. I want the whole world...Thank you for this review. I want the whole world to watch it -- immediately.<br /><br />IMO the key to awareness advocacy is severity. Here is why:<br /><br /> http://thekafkapandemic.blogspot.com/2011/06/severity.html<br /><br />To judge from your description, this movie will, pardon the vernacular, kick ass.Samuel Waleshttp://thekafkapandemic.blogspot.comnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-63189725544524083992011-09-21T17:32:10.898-07:002011-09-21T17:32:10.898-07:00Thank you for your review, very thought provoking,...Thank you for your review, very thought provoking, lets hope it opens some eyes to see our world :)theonlyfluffyonehttps://www.blogger.com/profile/15420286469396896536noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-29698287976655875472011-09-21T16:51:14.909-07:002011-09-21T16:51:14.909-07:00thank you chris, once again! your comment that thi...thank you chris, once again! your comment that this disease is "medieval" - as well as frightening - is so very true! what other disease could leave a severely impacted ME patient who's ultra sensitive to touch (as i am - and now, with chronic shingles)...feeling as though they've been skinned alive - and yet with no real help in sight...no effective relief from the pain? it approaches barbaric. <br /><br />i'm also glad this film highlighted the caregivers in such a sensitive way. it takes a great deal of love (and a lot of bravery!) to intimately care for the most severely ill. <br /><br />i know. my own husband cared for me for nearly 40 yrs - never shying away or holding back - when it was obvious that i was going through periods of apparent "contagion". <br /><br />he gave up much of his life to do that...and now at the age of 60, he has been recently diagnosed with ME...and will lose much of the remainder of his life - fighting to maintain whats left of it. we must ration our strength daily - to care for one another. <br /><br />it isnt enough to tell our story to the few we come in contact with (and their numbers are dwindling!)...they must see the story on film to grasp the enormity of the suffering! <br /><br />thank goodness for the efforts of natalie and her son josh...and pia and richard simpson (investinME). <br /><br />regards...jackie nanceAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-46896056996712074912011-09-21T15:28:39.925-07:002011-09-21T15:28:39.925-07:00Thank you for describing the film in more detail, ...Thank you for describing the film in more detail, Chris. I've only seen the trailer. Like you, I think it has the potential to open the minds (and hearts) of health practitioners and researchers who do not see the severely ill.<br /><br />I wish it was shown at the start of each day of the IACFS/ME conference as well. Yet I'm glad it is being shown at all. Perhaps an open bar could be set up in the screening room to boost attendance ;)Liz Willowhttps://www.blogger.com/profile/11224204717888883351noreply@blogger.com