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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. C

    Virtual Space: Creating a Place for Social Support in Second Life (ME/CFS)

    Here is an article on the ME and Relaxation Centre in Second Life - http://www.sheffieldyogaforme.org.uk/Download/SLMERelaxationCentre.pdf There is also a pinned post near the top of the Facebook page with instructions on how to join. https://www.facebook.com/ME.CFS
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    Power Plate

    Thanks Marg. Its interesting that you are getting benefits just standing on it. I guess one could just sit on it too. I can see why one would want to start slowly cos of getting too much lymph moving to quickly. I use a chi machine which is fantastic, but I had to start on that very very...
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    quercetin is a 'bioenhancer'

    I have always had gut problems and have not associated the bromelain with leaky gut. But it may be worth me stopping it for a bit and restarting to see if I notice anything. I hadn't heard of bromelain causing leaky gut with quercetin before reading your posts, but I didn't really look hard.
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    AHCC on special

    I have been on AHCC for about 2-3 years now - taking 2000-3000 mg a day. I developed breast cancer on top of my ME/CFS and most integrative cancer docs suggest mushrooms as cancer prevention. I am sensitive to many moulds and fungi and could not tolerate many of the mushroon products but I have...
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    Methylation and thyroid hormone

    Thanks guys for the responses. I didn't have autoimmune thyroid problems - well not any shown up by blood tests. Its interesting about the glutathione and BH4.
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    Methylation and thyroid hormone

    I have an SNP on MTHFR (C677T) (tested in a lab in Europe). I have been taking methyhlfolate for a couple of years now and it has definitely been helping (as well as other supplements including B12 etc). My UK doc wanted me to take quite high doses of methylfolate - i.e. to start on 1,000 ug...
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    Power Plate

    I was wondering if anyone has tried using a power plate and if it helped or caused a post exercise crash? I have occasionally seen ME/CFS people referring to using one. However I have looked at videos and the excercises shown look very inappropriate for those with ME/CFS. Or is there a...
  8. C

    quercetin, yes -- but adding bromelain?? probably no

    I take quercetin as I was advised to take it for breast cancer prevention, as it came up positive in a research in-vitro test against my cancer cells. Do you happen to have a link to where you read that quercetin may slow down phase I detox? Thanks.
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    quercetin is a 'bioenhancer'

    I take quercetin as a breast cancer prevention. I was advised by a nutrtional doctor to take it with bromelain before meals. I have also heard that vit C can help absorbtion of quercetin. Interestingly I took tamoxifen for a while and hadn't realised that quercetin has an effect on tamoxifen...
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    Is growing your own probiotic yoghurt possible?

    Just found this thread and it is fascinating. I have never made yoghurt and am dairy intolerant so am looking to try and make yoghurt from other sources. I am thinking of trying to make yoghurt from almond, quinoa or rice milk and using probiotics. Has anyone had much success with making...
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    FIR Sauna / MMS to the Rescue

    I have had MMS at times, but don't seem to tolerate it well after a few months and I have never managed to get past 6-8 drops twice a day. I also FIR sauna regularly and love them so much I haven't stopped - I always have one a week (as opposed to the three I used to have).
  12. C

    ME - Cancer Link Study Needed

    The incidence of Breast Cancer in those with ME/CFS would also be a good study. I know lots of people with ME/CFs who have had breast cancer including myself. Also some breast cancer tumours have been found to have XMRV in them. A private cancer doctor I saw in the UK thought there were a lot...
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    SODASE TEST RESULT/manganese deficiency help.

    Many people have got rid of their toxins by FIR saunas, so I would guess that would be a goode starting point. I don't know if there is a specific supplement you can take for cetrizine.
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    SODASE TEST RESULT/manganese deficiency help.

    Yup I think I had a little energy increase after getting rid of the nickel and felt a bit better. But it is not my only problem - I've got lots of other ones too, such as I had borreliosis. Carol
  15. C

    This may sound hokey..Rife Machine for CFS

    The Atelier Robin F165 is the machine people experienced with rife machines seem to be moving on to. http://www.pachealthonline.com/products.htm
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    New UK XMRV/Retrovirolgy Website - MEA announces

    The first thing that struck me about SW fifth from the right in the front row, is what is he doing with his hands while they are in his pockets LOL. It would be very interesting to get a psychologist to analyse his stance/posture.
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    Support Dr Sarah Myhill, help fellow CFS sufferers AND get your name IN PRINT

    Thanks. I take it that cocounut oil and cocount milk and cocoa powder are allowed in a stone age diet then. I hadn't been sure especially as she said no chocolate.
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    "Earthing" for Protection from EMFs

    Yup. Hi. To follow up on what I said about the chinese - Well my chinese TCM doctor always tells me to wear slippers etc. Also my qigong teacher said I should do qigong wearing shoes and not bare feet to stop bad energy. It seems to be a general TCM thing. My only personal explanation is...
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    SODASE TEST RESULT/manganese deficiency help.

    Have you done the DNA adduct tests justy? I had a low SODase and took mineral supplements and they did not help that much. What did help was getting rid of my nickel DNA adducts. JMH reckoned that my nickel DNA adducts were affecting the gene for the Mn SODase in me. Once I did a nickel...
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    "Earthing" for Protection from EMFs

    Doesn't it partly depend on where you live whether walking bare foot is good. In India and the Middle East it is hot. But in China, where it is colder, they say you lose chi walking around bare foot.
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    This will cheer you ladies up

    I can't have most types of chocolate becuase of the sugar and intolerances. However Sarah Myhill suggested to me to have coconut oil and lecithin daily for brain food. And she suggested mixing the cocounut oil with cocoa powder - its delicious - can do 2 things in one. I add a bit of xylitol...
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    Compression garments for orthostatic intolerance

    I get orthostatic intolerance, but had never heard of abdominal pooling. I wonder if I have that. Once I get up my tummy is always bigger - I had always put that down to my gut function/bloating. I do however, find my tummy is pulled in a lot more when using yoga fold over trousers by...
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    "Earthing" for Protection from EMFs

    Thanks for all this info. Not read about this before. I have been told of three cheap options to try and help reduce electromagnetic stress build up in the body 1. to have a shower or bath 2. to exercise (but of course this is not an option if you are ill) 3. to go to the bottom of the...
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    Dr Singh's XMRV Patents: Something for Dr Lipkin -and the NY Times- to chew on

    Just to add to this after thinking more about it - people with cancer can be toxic, and can have leaky cells, sticky red blood cells and can have mitochondrial dysfunction - so there could be loads of reasons why people with cancer can get fatigued.
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    Dr Singh's XMRV Patents: Something for Dr Lipkin -and the NY Times- to chew on

    Regarding the comments on breast cancer and fatigue. I got breast cancer after having ME/CFS for around 15 years. I was more tired for quite a few months after having a cancer op. I did not have chemo or radiotherapy, and was told by my docs that the cancer could be making me more tired - I...
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    Yoga

    Hi river, I wrote a review of yoga for ME audio tapes, CDs and DVDs and books designed for those with ME/CFS which can be found on the information page of www.sheffieldyogaforme.org.uk . There are also some photos which show you the sort of things done in the classes. It is difficult to...
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    Very Important News regarding Dr Myhill and the GMC

    Hi all, Just came across this. http://www.supportdrmyhill.co.uk/how_to_help.html
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    Perrin/lymph drainage/massage: makes sense or not?

    Well I don't tolerate extremes of temperature and could not tolerate a steam sauna tent (45 degrees) at all - I collapsed on the floor after one of those. I was OK with FIR, but had to build up gradually. I have a wooden box FIR sauna so can alter the temperature easily - I just started at 40...
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    Perrin/lymph drainage/massage: makes sense or not?

    I always have a supply of milk thistle just in case. I use other things too like Biocare hepguardforte and use FIR saunas, B12 etc.