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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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  1. T

    Please help Karina Hansen, severe ME patient, by signing these petitions! Video link included!

    Karina is still imprisoned and denied access to her parents. She has a lawyer but not one she chose and not one who seems to act in her interests. The lawyer she chose was replaced.
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    New Research to Explore Role of Online Peer Support on Phoenix Rising Forums

    I'm not familiar with any of the things you are talking about using but I couldn't sensibly answer any questionaire my doctor has ever given me. Questions about what you can and can't physically do don't take account of the fact that I might be able to do things if I suffer for it tomorrow - and...
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    Never Ask Us if We're Hungry -- The Answer's Always No

    I was always hungry and if I didn't eat regularly it would feel as if my stomach was eating itself. Then I started taking atp and I no longer feel hungry all the time. A gluten free diet made me so well for years that I was going to the gym - and thinking I was cured until I overdid it. I...
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    Coconut oil

    Came across this rare genetic disorder recently that has symptoms slighty similar to ME - but also causes seisures. Made me wonder if the coconut oil that helps get long chain fatty acids into mitrochondria might help with ME. Anyone tried it...
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    Taking Fatigue Seriously - An Interview with Dr. Julia Newton

    I am so pleased that someone is finally investigating fatigue. Recently I had an abnormal fibroscan - I would love to know if Dr Newton has considered conducting fibroscan tests on people with ME to see if they show similar results to those with PBC. Blood tests and an ultrasound have shown...
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    Blood Tests: Why Test the Blood? Dr Charles Shepherd

    Well I agree with him to some extent - no point in tests that don't improve management of the condition. We need more research on the treatments that seem promising then tests to see who would benefit from them. However I disagree that the current range of tests is enough. Personally I'd like a...
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    CFS/ME as a Liver issue

    dont think Fibroscan is available in the USA but it is in Canada http://www.liverscan.ca/#!faq/c1mhs
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    Desperately need to put weight on - please help.

    weight loss is common in coeliacs and can be misdiagnosed as ME/CFS therefore if you haven't yet had the blood test you should do so. Then go gluten free anyway - you can get gluten free pasta and eat potatoes to keep your carbs up. Eat bananas, good for causing constipation. Take a creatine...
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    Things of Beauty? Joy Forever -- Even with ME/CFS

    I was given an amaryllis bulb at Christmas. They grow so quickly that you can almost see it an the flowers are very large. Plants always make me feel happy but this one seems especially suitable for those with ME. "If, of thy mortal goods, thou art bereft, And from thy slender store two...
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    Blood Tests: Why Test the Blood? Dr Charles Shepherd

    1. Shouldn't be a problem but was - short of making a formal complaint and/or changing gp any suggestions? Another gp in the practice misdiagnosed an allergic reaction as a viral rash (despite me saying it was an allergic reaction, confirmed eventually by a dermatologist) so a different gp in...
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    Blood Tests: Why Test the Blood? Dr Charles Shepherd

    @charles shepherd sorry - forgot can you comment specifically on the effect of low vitamin D on liver function tests? Many people with ME are vitamin D deficient.
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    Blood Tests: Why Test the Blood? Dr Charles Shepherd

    @charles shepherd I wonder if Dr Shepherd has any advice for a UK patient who has found it extremely difficult to get these tests before diagnosis (and yes I have seen a so-called ME specialist, I managed to get a few more then) and when results are slightly abnormal does not have any further...
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    Please help Karina Hansen, severe ME patient, by signing these petitions! Video link included!

    Petition to allow Karina to be seen by an ME specialist - please sign this one https://www.change.org/petitions/the-guardian-of-karina-hansen-we-ask-you-to-allow-karina-hansen-to-have-the-right-to-a-second-opinion-from-a-leading-me-expert-dr-nigel-speight#share
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    CFS/ME as a Liver issue

    have just found this when searching the site for information on liver dysfunction. I have recently had a fibroscan. It was not conclusive but suggests a liver problem. My blood tests have never shown any issues. I would suggest anyone who can afford it gets a fibroscan. For those who cant...
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    How Do You Handle Autumn?

    rosie26 apples are a source of vitamin C, one of the cheapest antioxidants. I eat a lot of fruit in summer (we grow some) so my diet definitely changes between summer and autumn and it made me wonder how much other people change their diets. My sinus problems have been better since treating...
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    Supplements cause sinus problems?

    Can I also suggest a nasal spray containing xylitol - like this one http://www.xlear.com/xylitol-products/nasal-spray/ or a 100% xylitol chewing gum. The nasal spray can sometimes cause a foul tasting liquid to run down the back of the throat, hence some people prefer the gum. Xylitol is a...
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    How Do You Handle Autumn?

    I forgot to mention - magnesium is often very effective in reducing pain. As many people cannot tolerate its laxative effect magnesium sulphate baths are recommended if you can take baths and a spray like this http://www.amazon.co.uk/Better-Magnesium-Original-Spray-100ml/dp/B002VPDX4W if you...
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    How Do You Handle Autumn?

    I also find myself going into hibernation mode in autumn. My metabolic rate, always low, falls further and if I don't wear gloves my skin cracks. I'd like to mention a few things - first vitamin D. Dr Sasha Gominak (a neurologist) says you need to keep this within a certain band for restful...
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    Supplements cause sinus problems?

    sinus problems could be related to night time reflux and nausea can be a side effect of the supplements. Why not try taking them in the morning instead.
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    Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July

    Possibly. Some problems - lack of restful sleep, magnesium deficiency, low levels of 1,25 dihydroxy - are actually quite common across the ME group. Unlike an earlier poster I have no objection to drug therapies but if rituximab proves effective it isn't likely to be available for years.
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    Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July

    Sadly nothing with ME is that simple. If vitamin D supplementation had an impact on ME the effect would probably be gradual. Although supplying vitamin D would be cheap there are no drug companies to push for trials and to the best of my knowledge the impact of supplementation has not been...
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    Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July

    a few questions/comments that I don't think have been covered, apologies if they are idiot questions but excessive activity recently has affected my brain and I'm not clear what else rituximab may do besides kill B cells. I'm one of the people who had significant remission on a gluten free...
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    New Research to Explore Role of Online Peer Support on Phoenix Rising Forums

    there are many "users of internet forums" who never actually log in and post. Do you have a plan for identifying "lurkers" to see what they get from forums? I dont post a lot on these forums so if I had not seen this you might never know that reading about the methylation protocol made quite...
  24. T

    5-HT autoimmunity associated with immune/inflammatory probs & bacterial translocation in ME/CFS

    with missing data and other studies not showing similar results this doesn't sound too promising. However immune/ inflammatory issues seem quite likely and immunity starts in the gut. I look forward to reading the blogs.
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    Please sign this petition

    Can't believe this is allowed to happen - why isn't it before the european courts? http://www.causes.com/actions/1752801-severely-ill-m-e-patient-held-in-hospital-against-her-will?recruiter_id=182530899&utm_campaign=own_timeline&utm_medium=wall&utm_source=fb&open_dialog=inviter
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    Personal stories request for All Things Beautiful

    Perhaps she should have this story - where are the human rights lawyers? http://www.causes.com/actions/1752801-severely-ill-m-e-patient-held-in-hospital-against-her-will?recruiter_id=182530899&utm_campaign=own_timeline&utm_medium=wall&utm_source=fb&open_dialog=inviter
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    How many people have had helicobacter pylori tests?

    interested in whether people have ever been tested
  28. T

    Never taken an Rx--what do I try?

    you mention lots of supplements and a restricted diet and it isn't really possible to suggest without knowing what you've tried. However i can tell you that my sleep improved after I read Dr Gominak's theories and got my vitamin D levels right http://drgominak.com/vitamin-d. Also you may suffer...
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    What enzymes to use for biofilms?

    May I suggest NAC - see this paper https://idsa.confex.com/idsa/2010/webprogram/Paper2660.html Also if your problem is sinus infection then I have personally used both xylitol chewing gum and xylitol nasal sprays and found them useful. Xylitol is mildly laxative so if you have problems in that...