• Welcome to Phoenix Rising!

    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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. B

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I called Medserena today, their machines are .6T, this is the best available for upright.
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    obtaining IVIG/SCIG

    My doctor wants to prescribe IVIG, but it's very expensive and almost impossible to get covered by insurance. How can I compare prices in different countries, for example, Mexico, UK, Europe? Does anyone pay cash for IVIG or SCIG in any of these countries? How do you get it prescribed and how...
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    Emotional reaction to the Tuller interview in Australia

    Cross posted here: http://brookewritesme.com/2018/04/04/emotional-piece-featuring-journalist-david-tuller-moved-to-tears-link-at-the-bottom/ Australian journalists published an emotional piece today featuring journalist David Tuller moved to tears (link at the bottom). I’ve often thought, why...
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    The parents of Merryn, who died of ME in 2017, speak out

    @ebethc Oh wow, thanks for all this info :)
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    The parents of Merryn, who died of ME in 2017, speak out

    @ebethc how did you find this number? I wrote about this yesterday, and want to make sure I get it right. https://medium.com/@missbrooke/two-more-me-related-deaths-this-week-will-the-medical-community-take-notice-f21e266ea422
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    Comment by 'brooke' in 'MP calls treatment of ME patients “one of the biggest medical scandals of the 21st century."'

    Thanks @1gooddog! I’m actually American. There are other advocates in the US, we need more though.
    • brooke
    • Blog entry comment
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    In live debate, MP calls treatment of ME patients “one of the medical scandals of the 21st century"

    Hi @Hip, I wrote this up because a lot of people will not have the patience to read the full debate transcript. You and I will of course because we are interested in this, but for a wider audience, I decided to share just the main points. @Countrygirl It's hard to get major media outlets to pick...
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    MP calls treatment of ME patients “one of the biggest medical scandals of the 21st century."

    Yesterday, I summarized the debate personal blog with our community in mind (for people who were too sensitive to sound/light to see the video). Because it was shared so much outside of our circle, this morning, I moved the write-up over to Medium as healthy people seem more likely to read...
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    In live debate, MP calls treatment of ME patients “one of the medical scandals of the 21st century"

    https://medium.com/@missbrooke/in-live-debate-mp-calls-treatment-of-me-patients-one-of-the-biggest-medical-scandals-of-the-21st-52b67a782d55 Yesterday, I summarized the debate personal blog with our community in mind (for people who were too sick to watch the video but could read). This...
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    brooke

    Former traveller, Student, Patient
    • brooke
    • Blog
    • Blog entries: 3
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    Open Letter to Investigate Medical Abuse

    New blog post: http://brookewritesme.com/2017/11/20/letter-to-parliament-regarding-medical-abuse-against-mes/ Recently wrote a letter in support of MAIMES. Publishing it here so it doesn’t get lost in the ether. Dear Jeremy Hunt, On the heels of Unrest, an Oscar-nominated documentary about...
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    Alldaychemist

    When I switch to valganciclovir bought from here I feel like I am getting worse. This has happened a handful of times. Does anyone else experience this? Is there a way to independently test it? https://www.alldaychemist.com/catalogsearch/result/?q=Valganciclovir
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    Is it worth disclosing ME diagnosis to UK uni? Need to reduce walking but fear discrimination.

    Thank you so much @Skycloud, @boombachi and everyone. You could expect schools to follow the laws but I was scared because until a few months ago I could have expected doctors to want/try/know how to help. I completely lost faith in the medical system and didn’t have energy to fight an...
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    Is it worth disclosing ME diagnosis to UK uni? Need to reduce walking but fear discrimination.

    @justy that’s what other people are saying too. This makes me feel more comfortable going forward. I think I am going to submit the new, more detailed letter.
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    Is it worth disclosing ME diagnosis to UK uni? Need to reduce walking but fear discrimination.

    @justy I misspoke. Of course it wouldn’t be in the bounds of the law. What I meant was they may discriminate illegally but unless you have energy and money to fight I wouldn’t be able to do much about it. I sincerely appreciate your advice.
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    Is it worth disclosing ME diagnosis to UK uni? Need to reduce walking but fear discrimination.

    I should add, my close friends were mixed on whether to disclose/not disclose. I thought it would be best to consult people who have experienced this first hand.
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    Is it worth disclosing ME diagnosis to UK uni? Need to reduce walking but fear discrimination.

    @boombachi I don't have energy for a lawsuit. If it comes to that, that's the end of the road for me. My fear is that the university would not make it a priority to help over other things that they have to manage. If they google CFS it comes up as a psychiatric disease and if they ask the NHS...
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    Is it worth disclosing ME diagnosis to UK uni? Need to reduce walking but fear discrimination.

    I posted a few weeks ago asking if my university could require me to see a specific doctor to get accomodations, extended time on exams, placement in a hall closer to my dept building, etc. i spent the last few weeks securing a letter from an ME specialist in the UK. However, in that time, my...
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    Can UK based school legally require me to see their doctor to get extra time on exams?

    @charles shepherd, thank you so much for your reply. Unfortunately, it is the school's disability office who asked me to see the NHS doctor affiliated with the college. I had already submitted my forms from the doctor from my home country (I am a US student) and when I asked about the process...
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    Can UK based school legally require me to see their doctor to get extra time on exams?

    I should clarify, it’s a university, not a school. @NelliePledge, does that change anything?
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    Can UK based school legally require me to see their doctor to get extra time on exams?

    My recent test results from Dr Myhill showed a disability score of 3/10. Based on this and on seeing the treatments that have worked for the past year, my doctor wrote a letter requesting extra time on exams for school and rest breaks between exams. The university said the standard amount of...
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    Just had first appt with Dr. Kaufman

    Thanks @Learner1 Did you have to travel back home in order for the labs to be covered or did insurance pay even though you went to SonoraQuest in a different state?
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    Just had first appt with Dr. Kaufman

    @bspg @Learner1 Did either of you travel to see Dr K? I will be travelling and therefore will need to pay for all tests out of pocket. I'm curious to know the ballpark for how much this will cost.
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    GP Recommendations for NHS doctor near Oxford

    @NelliePledge There's an Oxford ME Group? Are you a part of this group or do you know how to find it?
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    GP Recommendations for NHS doctor near Oxford

    Hi Everyone, I have an doctor in the London to manage my care, prescribe medications, etc. However, I am looking for an NHS doctor to manage basic things and to also potentially coordinate my care with my CFS doctor since I will be living outside of the city. Does anyone know of a kind...
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    What is the appropriate dose for valganciclovir + valacyclovir?

    @Learner1 I meant to ask, how long had you been sick before Kaufman started you on antivirals? I've heard some patients say their doctors said there was a time limit of about 6 months to a year for them to work and after that there is a very limited chance they will be effective.
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    What is the appropriate dose for valganciclovir + valacyclovir?

    @Learner1 Please keep us posted on how it works for you. Dr. Kaufman is my first choice. It seems like many of his patients are actually getting better.
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    What is the appropriate dose for valganciclovir + valacyclovir?

    @Learner1, This is new ground for my GP, but far from a do it yourself project. I have improved significantly since seeing them. Unfortunately, I can't say I have recovered. One thing we can all agree on is that there are not enough CFS doctors to go around. The fact that my GP is interested in...
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    What is the appropriate dose for valganciclovir + valacyclovir?

    @Jonathan Edwards Thank you for advising of the rules. For clarification, I am not asking anyone to make the decision for me or for my doctor. I am asking for a link to the protocol publicly available online. I've seen these protocols posted on here before, but they don't answer this question...
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    What is the appropriate dose for valganciclovir + valacyclovir?

    Looking over various resources online it says that you should take 4g valacyclovir and 900mg valganciclovir if you have additional coinfections (CMV and HSV6) on top of the an EBV infection. Different resources also say that you should add these drug together the the documents I have that show...