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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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    I took Nitroglycerin tonight and it helped! What does this mean?

    Hi Gingergrrl - no worries - I wouldn't be so presumptive. He emailed me about you. We had discussed a "3rd party" in the past - all of this is without identifying info. I have PM'd you.
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    I took Nitroglycerin tonight and it helped! What does this mean?

    Hi Gingergrrl, My apologies - my notifications don't seem to be on, so I didn't realize you had responded yet. OK, I've had an email directly from our ME specialist - will get back to him today with more info today. Will PM you too. Hang in there. Parvo
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    I took Nitroglycerin tonight and it helped! What does this mean?

    Hi Gingergirl, was just popping in and saw your post. I sent you some files on microvascular angina and viral cardiomyopathy back in Nov 2014; these might be helpful, especially the ones on the Women's Ischemia Syndrome Evaluation, which studies women with clear coronary arteries, yet chest...
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    Has anyone achieved remission or recovery from treatment by any doctor?

    I was fortunate to receive high-dose IVIg in Germany (Pentaglobin), and within a week or so, had total remission for 2 months, including PENE (fluey post-exertional symptoms, inability to reproduce energy; etc), neurocognitive, cardiac (endothelial dysfunction & micovascular angina)...
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    National ME/FM Action Network in Nature’s Bounty “Share the Bounty” Contest in Canada!

    BUMP! Don't forget to vote daily! Harrass your Canadian friends (except Rob Ford - he doesn't like feel-good initiatives like recognition of Nelson Mandela, or Olympic Athletes)
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    URGENT: CANADIANS - Pls VOTE DAILY till Ap 8th!!!

    ... With my apologies if this is a duplicate thread. Hello to all Canadian Myalgic Encephalomyelitis and Fibromyalgia patients, friends, and family! As you may know, the ME/FM Action Network brought us the Canadian Consensus Criteria; this national advocacy body, works hard to fight for more...
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    IrsiCaixa's new study:Researching new tools for diagnosing CFS:HELP with the fundraising campaign!

    Pledge/payment via Paypal works fine from Canada. Thanks @serg1942 and Bob for the info. Go IrisCaixa!
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    Death Contract? ME/CFS Experts and Advocates Unite to Oppose US 'Case Definition' Contract

    @akrasia, you hit the nail on the head. This is all about a sense of urgency, and the longer we suffer under the umbrella of Lumping - which prevents any meaningful identification of biomarkers, and hence biomarker-targeted treatments - the longer we suffer, period. You said it so well, and...
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    Death Contract? ME/CFS Experts and Advocates Unite to Oppose US 'Case Definition' Contract

    Thank you Mark and Gabby for your thorough review of the IOM situation. As Alex has so aptly noted, this is Death for us in just so many senses of the word. It's a real yin/yang scenario, because while it is so very exciting to - for the first time - see the tangible support of 50...
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    CFIDS Association asking expert signatories about their current position on endorsing the CCC

    A DISSENTING OPINION TO DR BATEMAN'S: This comment is awaiting moderation on the Research1st site: http://www.research1st.com/2013/10/02/the-cfids-association-statement-on-the-h-h-s-iom-contract/#comment-47015.
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    International experts speak out against the IOM contract to determine clinical diagnostic criteria

    Mary, thank you for this important review. Here's a perspective on the perils of democracy in medicine, and possible context for the CAA's baffling stance on the IOM contract. "THE BEST ARGUMENT AGAINST DEMOCRACY IS A FIVE-MINUTE CONVERSATION WITH THE AVERAGE VOTER." This quote by Winston...
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    INVITATION: PATIENT INPUT ON CANADIAN ORPHAN DRUG FRAMEWORK

    Canadian patients - here's your chance to shape the draft ORPHAN DRAFT DRUG FRAMEWORK PROPOSED BY HEALTH CANADA! (BUMP) :thumbsup:
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    INVITATION: PATIENT INPUT ON CANADIAN ORPHAN DRUG FRAMEWORK

    INVITATION FOR PATIENTS TO GIVE FEEDBACK ON THE CANADIAN ORPHAN DRAFT DRUG FRAMEWORK PROPOSED BY HEALTH CANADA! This info is being re-posted with permission from the Canadian Organization for Rare Disorders.
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    Inner vibrations....what are they really?

    Hi soxfan, I just happened upon this thread, and thought you might be interested in a similar thread here: http://forums.phoenixrising.me/index.php?threads/internal-tremors-anyone.5335/#post-115913 that discusses "Internal Tremor". Not sure if this will help - I really think this is an...
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    MEandYou and All of Us: 90 Days of Stunning Achievement and a Look to the Future

    Great idea - healthy holiday in Norway! Watch out Norway... here we come! I already know of 2 things I wanna do in Norway: 1) Hang out with Espen Fadnes here: http://www.youtube.com/watch?v=3Cs-zZ0Qu5Y 2) Go skiing here: http://www.youtube.com/watch?v=MZchINzk43E
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    ONE MINUTE ADVOCACY #2; and GREAT Feedback on Thank You Card

    LAST DAY TO SIGN THE VMWARE THANK YOU CARD!!!!!!!! We know that M.E. is a complex disease. The team at VMware are providing vital information technology support to the Open Medicine institute, to help them make sense of our disease. These thank you cards REALLY make an impact with sponsors of...
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    ONE MINUTE ADVOCACY #2; and GREAT Feedback on Thank You Card

    Hi @ Bluestem, if you would like me to sign the card on your behalf, just post or message me what you would like me to say, and I can do it for you. Alternately, here is the link for Groupcards help: http://www.groupcard.com/help/ , and here is an email address for one of their support people...
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    MEandYou and All of Us: 90 Days of Stunning Achievement and a Look to the Future

    Sasha, thank you for a marvellous article, and for initiating the thank-you card. I think this is article provides the kind of information that will be important in years to come. So many ME - and other disease - associations could learn from Maria's example of strategic positive influence...
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    $4,600 Up for Grabs for UK ME/CFS Charities – Vote Once from Anywhere!

    Yeah! I love the guidance - VERY helpful Sasha! Seriously, thank you! I really benefited from it :) VOTED!
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    Good news! Norwegian govt funds Rituximab trial - possibly partial, amount not yet announced

    ONE MINUTE ADVOCACY: THANK MARIA, AND DONATE TO MEandYou! With thanks to Sasha for getting this started. NOW is a great time to thank Maria - and help speed up the Phase III Rituxan trial in Norway! Maria has explained that donations are still open at MEandYou, and the more we donate, the...
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    ONE MINUTE ADVOCACY #3: THANK MARIA GJERPE AND DONATE TO MEandYou!

    P.S. With thanks to Sasha for getting this going!
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    ONE MINUTE ADVOCACY #3: THANK MARIA GJERPE AND DONATE TO MEandYou!

    ONE MINUTE ADVOCACY: THANK MARIA GJERPE, AND DONATE TO MEandYou! By now most of you have probably heard the fantastic news that the Norwegian Government has given funding to allow the Norwegian Phase III Rituxan trial in ME to start...
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    ONE MINUTE ADVOCACY #2; and GREAT Feedback on Thank You Card

    SUMMARY: 5 REASONS TO SIGN THE VMWARE CARD! 1) IT ONLY TAKES ONE MINUTE here:http://www.groupcard.com/c/ZjA2X_lwClv . (And you can use a pseudonym). 2) INFORMATION TECHNOLOGY HELPS US: “ME/CFS” likely represents MANY subgroups of multisystem diseases. We need the Information Technology...
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    Taking Fatigue Seriously - An Interview with Dr. Julia Newton

    Thank you, Clark, for a fascinating article. When Dr Newton's group came out with the article on endothelial dysfunction in ME/CFS, I was already hooked. But her subsequent work on lactate production in "CFS", clear intention to do translational work and repurpose drugs to treat this lactate...
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    ONE MINUTE ADVOCACY #2; and GREAT Feedback on Thank You Card

    Thank you Sasha! Yes, I did last time - got a little sidetracked with this crash, but am doing the Co-cure post in the next couple of hours. Thanks for the encouragement!
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    ONE MINUTE ADVOCACY #2; and GREAT Feedback on Thank You Card

    ONE MINUTE ADVOCACY #2: I've been crashed, so unable to beat the bushes recently. Please sign this card for the VMware Foundation, as thanks for their grant to the Open Medicine Institute. Your one minute REALLY makes a difference! Link: http://www.groupcard.com/c/ZjA2X_lwClv AND ANOTHER...
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    ONE MINUTE ADVOCACY #2; and GREAT Feedback on Thank You Card

    P.S. When you sign the VMware Foundation card (http://www.groupcard.com/c/ZjA2X_lwClv ), please add: YOUR COUNTRY - you can fit it behind your signature HOW MANY YEARS you have been ill, housebound, or bedbound Thanks!
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    ONE MINUTE ADVOCACY #2; and GREAT Feedback on Thank You Card

    ONE MINUTE ADVOCACY #2: Please sign this card for the VMware Foundation! http://www.groupcard.com/c/ZjA2X_lwClv AND AN UPDATE: Feedback on the Edward P. Evans Foundation’s card of thanks! Recently we asked you to sign a Thank You card for the Edward P..Evans Foundation, for its grant to the...
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    IMPORTANT!!! Please sign this e-card to thank Edward.. Foundation for funding Genetic OMI Study

    ONE MINUTE ADVOCACY for the Open Medicine Foundation! Just a quick update: The online Thank You card to the Edward P. Evans Foundation for their sponsorship of groundbreaking genetic research on ~1000 patients with ME and CFS now has 91 signatures from all over the world, including...
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    $1 million donated to Open Medicine Institute for study

    This is excellent news! FYI I didn't want to hijack this thread, so started a new one for a Thank You card. Check out this thread (http://forums.phoenixrising.me/index.php?threads/important-please-sign-this-e-card-to-thank-edward-foundation-for-funding-genetic-omi-study.23077/#post-352938)...