• 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. D

    Research on what people with ME/CFS want from their GP?

    Thanks very much for your efforts everyone. They are much appreciated.
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    Research on what people with ME/CFS want from their GP?

    Thanks for that input. I have family members and am associated with a support group so have some understanding of the issues. What you have written will add/reinforce that. I'm think that a doctor would respond a little better to a research article that has identified the issues of people with...
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    Research on what people with ME/CFS want from their GP?

    Hi, I have a meeting in a couple of weeks to talk to the Clinical Director of one of our large GP practices about how they can do a better job of caring for people with ME/CFS. I have some ideas of my own but I'm sure there must be some research out there on what people want from their GP. I've...
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    Questionnaire for CCC

    Bump
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    Questionnaire for CCC

    Hi, I once remember seeing a questionnaire created by Leonard Jason of the Canadian Criteria. I now can't find it. Does anyone know where it is and whethr there is a validation paper? Thanks Don
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    Poll: Has raising the head of your bed helped your OI/POTS/NHM?

    So how does raising the head work with two people in the bed- one with POTS and one not (and the one without sleeps on their stomach).
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    DIY Olive Leaf

    My wife takes multiple OL each day to control the viral symptoms she gets. This ends up costing us heaps. A friend recently told us that he makes his own and so we have just tried it. Its simple, get olive leaves, dry it, grind it (food processor and coffee grinder) and put in capsules. She's...
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    CDC Study Must Include CPET, NK Cell and Viral Testing, Advocates Insist

    Anybody got her email address handy?
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    Beds? Day beds? Recliners?

    Hi, So people in my family with ME spend a lot of time horizontal because of fatigue and OI (as many of you probably do). This is starting to result in some musculoskeletal issues. I'm wondering what 'equipment' people use for this? Thanks Don
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    teenage chat

    Thanks everyone for your ideas. We will explore those. Don
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    teenage chat

    Thanks for those thoughts. She has normal sleep patterns so we thought those we reversed sleep patterns from the uk would be on while she's awake but there are not as many as we thought. We will keep looking. We will check out 'not crazy'
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    teenage chat

    Hi, My wife and three of my daughters have ME/CFS. The youngest of them is about to turn 17 and has had ME/CFS since she was about 5. She's spent little time at school and rarely gets to leave the house. She has recently got a laptop and has been trying to find people to chat and make friends...
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    Detecting the shape of red blood cells

    http://www.stuff.co.nz/science/8882552/Blood-cell-sounds-reveal-shape New simpler method for testing the shape of red blood cells. Could be used to test some theories that have been proposed.
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    Come Discuss The Blue Ribbon film (with Ryan Prior)

    Hi Ryan, Thanks for your thoughts. Can you please give some information on how the film will be distributed? Don
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    PACE Trial and PACE Trial Protocol

    Hi, our (New Zealand) government is putting together a report on ME/CFS and it looks like they are going to say that CBT and GET are the best treatments. Probably influenced by the NICE Guidelines and the PACE Trial. We would like to present them with some contrary findings before the report is...
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    Response to valganciclovir in chronic fatigue syndrome patients with human herpesvirus 6 and Epstein

    mean treatment in months was 6.5 (SD = 2.0)
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    Response to valganciclovir in chronic fatigue syndrome patients with human herpesvirus 6 and Epstein

    Valganciclovir Treatment Patients followed one of two valganciclovir treatment regimens based on clinical judgment (e.g., history of side effects to antimicrobials). Fifty-eight patients took 900 mg of valganciclovir twice daily (induction dose) for 3 weeks, followed by 900 mg of valganciclovir...
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    I'm Walking Across Michigan.

    Hi KGBmi I don't think there would be any group that everybody here would agree would be a good recipient of the money. Just do it. What you are doing sounds great. Take care of yourself. Thanks for what you are doing. Don
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    seems to be working well

    Thank you Rich and Freddd for your replies. They are always appreciated. I will think through your responses. I wish we could afford the testing and had a Dr who understood all this - but... Don
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    seems to be working well

    Hi, I just thought I would update where we got to. Things improved well for my wife and by March she was able to do 40-50 minutes light exercise (stretching etc) a day and be reasonably active. Then at the end of March she did too much and has been struggling since then to recover. Two...
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    Advocacy to governments: What is more likely to work?

    Hi, Does anyone have the references for these studies handy. I have particularly interested in the chicago study. Thanks Don
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    Role of Biotin in methylation

    Hi, One of the threads in the general treatment section asks people to list the supplements that they have found most effective. When I looked at it Biotin (which is a B vit) was commonly listed. Does anyone have a theory on how this links with methlation or doesn't it? Don
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    Advocacy Brainstorming: The Thread on Threads

    Hi, Great thread Alex. I really hope people (including me) can follow through with your intentions. One of the reasons I think it is a great idea is that ME suffers from a lack of energy. That is, the people who know about it and care don't have much energy to make a difference (either...
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    seems to be working well

    Hi, Thanks for your replies. Yes these two daughters satisfy the Canadian critieria (I have a 3rd daughter with similar symptoms but she does not satisfy the CCC).
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    seems to be working well

    Hi, My wife continues to improve. Since being on the Simplified Meth protocol she has gone from being on her bed all day except for a couple of hour to only needing an hours rest a day. She is even doing gentle exercise for 20-40 minutes a day. One interesting difference is that in the past...
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    How much acyclovir

    Hi, Thanks Heapsreal for your thoughts. We can't afford valtrex so are trying to do it with acyclivir (its subsidised in NZ). I've read the articles where the dose of valtrex is described but am wondering what the equivalent dose of acyclivir is. Thanks Jenny for the link. I have actually...
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    seems to be working well

    Hi, My wife continues to improve. She decided she would prefer the extreme pain in her back than getting her bad ME symptoms back (helped me realise just how bad it must be for her). As it turns out her pain is reducing with physio etc. Her ME symptoms are now much less and she is off...
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    How much acyclovir

    Thanks Uno for your reply, My daughter was prescribed IV acyclovir for 3.5 days about a year and a half ago for another infection and her ME symptoms also improved over the next couple of weeks. Things then stayed pretty stable for 6 months and then have been declining. So we know that...
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    How much acyclovir

    Hi, My daughters GP is willing to prescribe her acyclovir long term. At this stage he has prescribed 400mg twice a day (total of 800mg a day) becasue this is what he is used to for other herpes conditions. However I doubt this is the therapeutic dose for ME. I think he would willing to...
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    seems to be working well

    Hi, Thanks Vegas and Heapsreal for sharing your knowledge. I was thinking that maybe a better methlylation cycle would mean that she could handle the corticosteroids better but we will heed your warning. Yes we will continue with the B12 etc and physio. This is such a pain (excuse the...