tag:blogger.com,1999:blog-7368056645691128384.comments2023-05-17T13:15:50.282+01:00Only RestingBarry Fotheringhamhttp://www.blogger.com/profile/16158013718479616955noreply@blogger.comBlogger338125tag:blogger.com,1999:blog-7368056645691128384.post-65767082009097216332012-08-19T06:02:18.458+01:002012-08-19T06:02:18.458+01:00Hi Barry, I know I'm writing this late but I j...Hi Barry, I know I'm writing this late but I just wanted to thank you for helping Maria get the word out. I remember that initial conversation w/Maria when things were very much as dire as she described and we were brainstorming ways to find a way out, and because of your & everyone else's help, I saw light in her eyes last night that I haven't seen in a long time. <br /><br />IMO there is the greatest testament to how much power we have to help other patients from our bedrooms. I hope other patient advocates will take notice. Joeyhttp://blog.healclick.comnoreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-70393005807767499272011-12-18T00:35:40.000+00:002011-12-18T00:35:40.000+00:00I know the mindset, Maria. Like you I was huddled ...I know the mindset, Maria. Like you I was huddled in the only place I could live without paying rent. Wondering if the roof would cave in first or the floor drop beneath my feet. <br /><br />Living in the mountains, I had deer mice and wood rats as housemates, with an occasional bear, tree frog in the bath, and bats. I knew the mice carried more infectious germs (hanta virus for one) but was helpless to close up the many holes that permitted their entry. And bears would thrash through plastic-covered windows in my absence (say for doctor appts) if I left food out. <br /><br />Like you, I have chronic Lyme with severe neuro and muscular-skeletal problems. I asked my brothers (who lived far across the US) for help - family, right? Doesn't family stick together and help each other? Two didn't respond. One did and said he and his wife were saving to buy a second sofa like the one they had ($1000). This bro and his wife have great jobs, good incomes, no kids, and a huge estate home with pool in a gated community. So much for family.<br /><br />Having shamed myself by asking for help, I felt rejected and worthless when my family was unresponsive. Friends did what they could, but no one had so much extra that they could make a big difference for me. I spent a lot of time crying and struggling to see life differently - to think my way out of that dirty, degraded box.<br /><br />I had a miracle happen. Without any effort by me I was swept up into a class action suit against the insurance company who denied my longterm disability claim on the excuse that Worker's Comp had denied me. The company had denied over 500,000 claims in a few years, and thus a legal suit was made against them for frivolous claim denials and anyone denied could reapply with a huge amount of documentation and appeal information. <br /><br />To cut to the end, I decided that this was my last chance to speak my truth and not be led by lawyers (who had also abused my trust, took my money and didn't help me).<br /><br />I won a claim reversal. This hasn't lifted me out of fear of living under a bridge as the claim payments end when I'm 65 - in one year and 10 months. But it did lift me out of that rotten, filthy, unsafe home with no regular electricity (solar and generator only) and plants growing thru the floor and walls.<br /><br />I wish I could send you money to help your situation but my miracle didn't include that kind of financial benefits. But I am writing this to tell you that I was in such despair and saw absolutely no way my situation could change without someone (obviously not my brothers!) rescuing me. I never imagined that any of the disability claims that had been denied could be revived and end up paying me a monthly amount that let me move from that situation.<br /><br />And an additional outcome was that just one year after I was able to move from that decrepit old trailer in the mountains to a small cheap rental in town, a wildfire from lightning swept thru the whole area and burned my property, many others, and the surrounding many square miles.<br /><br />I look back on that and think how horrible it would have been to still be in that home when the wildfire occurred. To escape to a disaster shelter and have nothing to return to. <br /><br />I don't know how I'll survive when this insurance money ends. But now I do know that my imagination isn't fluid enough to encompass all that can happen.<br /><br />So I can only pass on to you hope - and the awareness that we can't see all that might happen to rescue us. Asking for help might get you more than it did me. However it comes to you, I hope you have your own miracle.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-11969357335668855662011-12-17T20:00:09.484+00:002011-12-17T20:00:09.484+00:00barry, very touching that you made this a blogpost...barry, very touching that you made this a blogpost. maria, i, too, am happy to share your post. as creek said she was in your shoes and thru the NEID's community online - she eventually found a home.<br />alisa xx~Elisehttps://www.blogger.com/profile/03467607357435049939noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-16687247917279659022011-12-17T17:36:01.554+00:002011-12-17T17:36:01.554+00:00Thanks for reaching out, Maria. As you may know, m...Thanks for reaching out, Maria. As you may know, my two children and I have been in similar straits and have had to reach out. I'll share this and hope that it finds the right people who can help.Creekhttps://www.blogger.com/profile/06145185297188783266noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-73930077776513947572011-12-17T15:57:22.972+00:002011-12-17T15:57:22.972+00:00Hell..all I ever seem to have to give are my tears...Hell..all I ever seem to have to give are my tears ... no reason for shame on Maria's part ... Shame on the world .... always seems the people who should feel shame .. never feel much beyond that which motivates actions that create so much miseryAnonymoushttps://www.blogger.com/profile/06676983862994242632noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-90906966999091027142011-12-12T12:48:29.838+00:002011-12-12T12:48:29.838+00:00You ok B? You have been very quiet lately. I must ...You ok B? You have been very quiet lately. I must have missed this. Hope you are feeling better since.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-58290451293552981252011-12-06T15:39:10.065+00:002011-12-06T15:39:10.065+00:00you barry are a wonderful intelligent kind and hon...you barry are a wonderful intelligent kind and honest person,please dont feel alone or lose hope. kal xxxxxAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-82890441476906532422011-11-11T18:25:02.773+00:002011-11-11T18:25:02.773+00:00Hi Barry, the bit about letting go of the idea of ...Hi Barry, the bit about letting go of the idea of fairness got me. Because i was undiagnosed for so many years i just thought my burden had been singled out to be a hard one. I railed against the unfairness of it. Why did i have to work so hard just to get through the day when others around me seemed to sail through. I suspected i was lazy, a malingerer, a nobody going nowhere, despite the fact that i was constantly striving so hard...<br />Yesterday, before reading your post, i realised that i had stopped the "It's not fair" mantra in my head. I realised that i am not constantly judging myself because i finally know I AM ILL! And i do still have a life.<br />Thank you so much for always writing so honestly, you help me enormously through your posts and even though we have never met know that i am here for you too.<br />Justine xxAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-3866193930141207092011-11-09T22:23:53.042+00:002011-11-09T22:23:53.042+00:00Photo says everything .... been sitting here stari...Photo says everything .... been sitting here staring ......................at itAnonymoushttps://www.blogger.com/profile/06676983862994242632noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-9165212106708535252011-10-31T15:58:52.427+00:002011-10-31T15:58:52.427+00:00Healing takes as long as it takes.....cant be rush...Healing takes as long as it takes.....cant be rushed...part of the process ...but you do have a load of people here who'll be there for youCusphttps://www.blogger.com/profile/10717783581169397585noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-59271121170340315162011-10-31T02:41:40.172+00:002011-10-31T02:41:40.172+00:00This resonates with me. This sense of stuckness, ...This resonates with me. This sense of stuckness, of being unable to effect the world around me, and more importantly me.<br /><br />The more exhausted I am the more I live in that horrid space of constant self analysis, where my memory throws up moments of gracelessness that I beat myself with. It is like being perpetually hungover and tormenting yourself with the stupid things you have said and done and the hurtful things done to you.<br /><br />I think we underestimate our speed of moving forward, as we appear to the eye not to move at all. But Fartingham, we move way faster than healthy people, we grow way faster, and we change hugely. But our physical stillness belies it. <br /><br />xoxoxoxoMarzihttps://www.blogger.com/profile/06397550642253454658noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-62695820936195847332011-10-30T21:00:29.688+00:002011-10-30T21:00:29.688+00:00what can i say that hasn't already been said h...what can i say that hasn't already been said here? i relish the raw honestly of this post. choosing to move forward is to be admired when one is so overcome with grief. wish healing could be faster.~Elisehttps://www.blogger.com/profile/03467607357435049939noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-77863219497671639652011-10-30T20:42:45.903+00:002011-10-30T20:42:45.903+00:00OK, so I misremembered it. It was from the famous ...OK, so I misremembered it. It was from the famous feminist novel, The Women's Room, by Marilyn French, and the exact quote is, "There was no justice, there was only life. And life she had."<br /><br />http://www.amazon.co.uk/Womens-Room-Virago-Modern-Classics/dp/1860492827Amyhttps://www.blogger.com/profile/04778257064104799002noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-6224597843516781012011-10-30T20:36:03.693+00:002011-10-30T20:36:03.693+00:00Barry, this post reminds me of a quote I wrote dow...Barry, this post reminds me of a quote I wrote down many years ago, when first battling with illness: "There is no justice, there is only life."<br /><br />I must look it up and see if I can find the source.<br /><br />Amy xAmyhttps://www.blogger.com/profile/04778257064104799002noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-89713746053613148712011-10-18T20:57:04.851+01:002011-10-18T20:57:04.851+01:00Hey, Barry - I just (finally) read your story at B...Hey, Barry - I just (finally) read your story at Becoming Visible 4ME (yeah, only about 6 weeks late!) I wasn't sure if you were still reading comments over there, so I'll reprint my comment here:<br /><br />Hi, Barry - <br /><br />I am, as usual, way behind and just now read your story here (it's been sitting in an open window on my browser all this time!)<br /><br />I am stunned to find out you've only been sick for 15 months. Your level of emotional adjustment and acceptance are pretty amazing for such a short time being ill. I'm even more impressed with you than I was before! :)<br /><br />I share a lot of your characteristics and did the same as you, once I was finally diagnosed - researched online like crazy and read everything I could to try to understand this illness. I did find quite a few medications that have helped me - they are what keeps me going these days, and I am grateful for the improvement even though, like you, I am still very limited compared to my old life.<br /><br />Thanks for sharing your story here, Barry, but also for your determination to help others - your blog and FB group have both helped a LOT of people, and you should feel good about those accomplishments!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-19182192974741900112011-10-11T00:24:03.344+01:002011-10-11T00:24:03.344+01:00@Justin
Correction: Annette pays herself plenty!
...@Justin <br />Correction: Annette pays herself plenty!<br />@Barry <br />Fantastic, I couldn't have said it better!!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-21557360569499684862011-10-09T12:17:09.157+01:002011-10-09T12:17:09.157+01:00Anon and Justin,
thank you both for your replies.I...Anon and Justin,<br />thank you both for your replies.I asked the question because <br />I did hear from a reliable source that at one point the WPI was so short of cash that a number of employees did not pick up their paychecks for some time.<br />I have since heard but don't know if it is true that Judy handed her patent rights over to the WPI.<br />For her sake I hope this is not the case<br />I have never thought the Whittemores were in it for the money, but I do agree Annette was probably not the best person to manage the Institute.<br />Regarding the blood tests which they sold, that matter needs clarification for those who shelled out a lot of money some could ill afford.<br />Anon I did not think you were rubbing salt into our wounds, I only wondered if you had information which we were not privvy to. I was not intending to start trouble here when I feel the ME community should be trying to hold itself together rather than fragment.So please don't get me wrong.<br /><br />One of their big mistakes from the WPI point of view was that of sending Judy round the world advocating and speaking to patient groups. You see the patients saw her not only as a scientist giving them hope of a cure, but they also saw a warm compassionate woman who cared about the patients which is something very rare in a research scientist.<br />A lot of these patients themselves advocated for the WPI because of Judy.<br />They donated money and spent a lot of time and energy they could ill afford on voting for further funds because they believed Judy was heading the research. So I suppose it is only natural now that we have a whole community of very upset, angry and confused patients.<br />We can only look to the future and hope someone will help our cause.Me, myself and MEhttps://www.blogger.com/profile/10630294932861801754noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-58744311292871771482011-10-09T03:59:41.471+01:002011-10-09T03:59:41.471+01:00anon &
me, myself and I:
WPI's 990 form ...anon & <br />me, myself and I:<br /><br />WPI's 990 form listed something like $156K i think for a salary. That is certainly not out of line imo esp considering these contracts are almost always structured so that the employer keeps all intellectual property. Any scientist associating themselves with ME, esp if they are outspoken for patients and valid science, are going to get their careers trashed, so the salary certainly isn't adequate compensation in that light.<br /><br />Annette's salary is $0 and she and her husband put in millions, so it is really too bad if, in fact, she was an inefficient manager (i don't know enough personally to conclude either way, but am leaning towards yes, she was), but you certainly can't say she was out for money or that it was not altruistic. At least she does something for her daughter and other pwME. Most parents just make the situation worse for their children by not believing them, etc. <br /><br />The blood test stuff does seem sketchy though and I certainly see why people who shelled out their last dollar for it are angry.Justinhttps://www.blogger.com/profile/16661093224060056052noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-51260475528467174622011-10-09T02:39:25.745+01:002011-10-09T02:39:25.745+01:00Me, Myself and ME
All i meant was she received a ...Me, Myself and ME<br /><br />All i meant was she received a salary for her job at the WPI. (i'm not privy to her salary and maybe she wasn't well enough compensated. sorry the brain fog often causes poorly communicated thoughts) All i expected from her was normal standards of professionalism not for her to become an advocate for us as sometimes having emotional distance from the issue can result in clearer thinking.<br /><br />I apologise if my words are rubbing salt in the wounds after this trauma but i'm really angry and i don't know who to trust or believe. I really hope when the dust settles things don't seem as bad or at least there is something positive to take from this.<br /><br />At the moment i can't beleive this will work out in a way i like.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-47761846848445227322011-10-08T17:29:12.197+01:002011-10-08T17:29:12.197+01:00Thank you for your honesty in presenting this summ...Thank you for your honesty in presenting this summary, Barry. I have to admit that I vacillate between optimism because I think Dr. Mikovits is standing in the doorway of solving this illness, and desolation thinking that hope no longer exists. I really hope Dr. Mikovits continuees her research.<br /><br />Dr. Mikovits asked me to post this message for her: <br /><br />Dr. Judy Mikovits thanks patients and friends for their support. She intends to continue her research and she will not give up. She will never participate in perpetrating fraud on patients or funding organizations.Wildaisyhttps://www.blogger.com/profile/03387587496317619866noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-79419585047833982011-10-08T16:44:25.718+01:002011-10-08T16:44:25.718+01:00I attended the IACFS/ME conference in Ottawa the e...I attended the IACFS/ME conference in Ottawa the end of Sept. where Annette presented the reason she built the WPI which was to find the cause of of ME/CFS which caused her daughter to be bed ridden. She had made great improvements to the point of volunteering. A member of the audience asked how her daughter is now, & she responded that there has been a complete relapse. Annette looked very tired, & strained. I assumed her daughter had been taking anti virals.<br />Judy did a presentation for HGRV, & John Coffin presented against HGRV in ME/CFS. He kept asking her to 'bring on' her proof. It was a very uncomfortable moment. I hope this helps in what I observed of what was going on previous to the firing event. I had a bad relapse & couldn't continue with the conference.<br />JoanAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-90089631280045654822011-10-08T16:24:50.858+01:002011-10-08T16:24:50.858+01:00Anonymous,
in what terms did you mean Mikovits was...Anonymous,<br />in what terms did you mean Mikovits was well compensated please?<br />That has never bee my understanding, that's why I ask.Me, myself and MEhttps://www.blogger.com/profile/10630294932861801754noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-55781874794089804252011-10-08T14:16:34.087+01:002011-10-08T14:16:34.087+01:00Thanks Barry for putting into words what I feel.Thanks Barry for putting into words what I feel.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-54429336511349893382011-10-08T10:11:28.785+01:002011-10-08T10:11:28.785+01:00I second Cusp. Well said Barry.I second Cusp. Well said Barry.Dusty Bogwranglerhttps://www.blogger.com/profile/14378437798741434260noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-11728323741536522742011-10-08T08:07:59.163+01:002011-10-08T08:07:59.163+01:00Really great piece of writing and well done for ma...Really great piece of writing and well done for making it so coherent when feelings are running so highCusphttps://www.blogger.com/profile/10717783581169397585noreply@blogger.com