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

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  1. NexusOwl

    Central sensitization: a matter of concern

    Hi. Is this a research you've done by yourself? It's really helpful and I'd like to send it to some charities and associations in Spain. I'd also love to translate it. If there is a link (to a blog or an actual publication) I would apreciate it a lot. And if it's your work and you'd give us the...
  2. NexusOwl

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    This hyperemesis thing makes me think of VanElzakker's theory on vagus nerve, because I understand that one of the principal effects of drugs that stimulate the vagus nerve exacerbate vomiting.
  3. NexusOwl

    Scientists trade insults over ME (JHP special issue)

    One of the journalist in charge of this is replying to us on twitter. I sugest some of you join in to get the good argumentation my foggy and non-english brain isn't able to do ;) Already pointed him to Tuller, Colby, MEactUK, etc
  4. NexusOwl

    OMF News February 2017

    A friend of mine approached OMF for the same and they told him to use automatic subs :/ I think if someone allowed us to submit subtitles it could be of great help for everyone.
  5. NexusOwl

    OMF(Open Medicine Foundation) OFFICIAL THREAD inc Q And A!

    Hi @Ben Howell can I donate to OMF with bitcoins?
  6. NexusOwl

    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    Don't we already have accelerated aging and increased risk of cancers?
  7. NexusOwl

    OMF News February 2017

    @Ben Howell @Rose49 do you know if I could donate with Bitcoin?
  8. NexusOwl

    New Open Medicine Foundation Video: Ron Davis Reports on "Fast-Tracking" ME/CFS Research

    Sorry Jenny, I was talking about OP's surprise on Ron Davis not trying to impose the hypothesis they have. I didn't realise you've been discussing on his citation of Crawley!
  9. NexusOwl

    New Open Medicine Foundation Video: Ron Davis Reports on "Fast-Tracking" ME/CFS Research

    He's looking for a cure for his son after all. Much more important than "being right" is to make things the right way so they find the cure.
  10. NexusOwl

    Spain: ME/CFS situation in Spain

    I'm sorry I haven't been able to attend this thread, but I've been working on reversing this situation, for that matter we at #MillonesAusentes have created this little introduction that can be shared with spanish-talking medical practitioners...
  11. NexusOwl

    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    I use propolis daily and if I take too much my belly hurts badly (around the spleen zone I think) and I get worse. But it is one of the best things I've found for Multiple Chemical Sensivity crisis.
  12. NexusOwl

    OMF- Sharing what's happening-News January 2017

    Is there a way Parents and ME could visit Spain or at least arrange some kind of videoconference with some parents here? I think I can do as an interpreter myself or could find someone. I can talk to DOLFA, the association for kids with ME and FM and many other interested people. The situation...
  13. NexusOwl

    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    I've read in cases of congenital PDH deficency thiamine, carnitine and lipoic acid are used as supplementation and many respond to thiamine. Do you guys think any of these would help us? I remember thiamine being one of the most recomended supplements by Ken Lassesen whose protocol some people...
  14. NexusOwl

    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    I just recived some results from analysis and I had low lactate in blood... does that sort out a pyruvate dehidrogenase disfunction or it can happen too? It was an analysis that they made me at home, when I was just waking up.
  15. NexusOwl

    Wessely on air at BBC 4 Radio

    Maybe we can send complaints to the twitter account of this. I can't do much because english is not my first language and It's difficult for me to follow the conversation. Hear the program: http://www.bbc.co.uk/programmes/b006qptc Twitter account: https://twitter.com/bbcworldatone?lang=es
  16. NexusOwl

    High-frequency rTMS for the Treatment of Chronic Fatigue Syndrome: A Case Series

    I've warned Cort Johnson about the use of this treatment in my country with AWFUL results. I can see why the dropout happened. I'll post here what I said in a comment to this article http://www.healthrising.org/blog/2016/12/17/fibromyalgia-clinical-trials-overview-2017/
  17. NexusOwl

    Treatment and management of CFS/ME: all roads lead to Rome

    I'll try to find someone that can point it out for them if I can't manage to talk to them myself.
  18. NexusOwl

    Treatment and management of CFS/ME: all roads lead to Rome

    Interesting! I only know José Alegre there, it's a "expert" from Catalonia that has used almost every approach and has launched a lot of private clinics for CFS/ME and FM. He is like the maximum authority in Spain for CFS/ME. I'm happy to see they have decided to be rigurously updated in...
  19. NexusOwl

    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    When I wake up I'm not too hungry but if I don't eat I feel really bad. Once I start eating I get hungry again in less than half an hour. I suspect I might have anemia tho, so maybe the hunger can be explained by it.
  20. NexusOwl

    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    I'm REALLY hungry... I've had to increase meals and I go to bed hungry. It's a real pain, but I've survived the new year's eve so I think it's helping.
  21. NexusOwl

    THE ORTHOMOLECULAR TREATMENT OF CHRONIC DISEASE: 65 Experts on Therapeutic and Preventive Nutrition

    I have a orthomolecular guide to treat cfs in spanish. I haven't used it much for the last years but at the beggining it kind of gave me an insight of what could be wrong with me and pointed to some supplements that even now seem to be used and/or researched. If I find it in english I can post...
  22. NexusOwl

    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    I'm not out of carbs tho. Just increasing aminoacids and protein intake dramatically. My carbs intake hasn't even been reduced to its half, and it was my main meal source.
  23. NexusOwl

    Whey protein powder to address ME/CFS metabolic issues being identified by researchers - which one?

    I've sometimes consumed it allong with quinoa. Maybe it makes a difference.
  24. NexusOwl

    Whey protein powder to address ME/CFS metabolic issues being identified by researchers - which one?

    I can't have beef, dairy or soy, so I'm using hemp protein. It seems to help. At least it really feels good, one of the foods that make me feel the best allong with some mushrooms and artichoke. In fact I thing this is the best "food-medicine" I've had ever.
  25. NexusOwl

    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    I've been increasing my aa and protein intake for some days now and I have felt that urge to increase meals too. The hunger is unbearable. At first I thought there might be some bacterial/candida infection going on, but maybe I'm experiencing what you did.
  26. NexusOwl

    Working on a Aminoacids rich, low Carbohydrates diet based on faulty PDH

    So, which is the best aproach to carbohydrates? Totally avoidance (I don't know if that's even possible) or just try to reduce some specific sugars?
  27. NexusOwl

    Working on a Aminoacids rich, low Carbohydrates diet based on faulty PDH

    @Hip posted this in the thread on PDH and maybe we can use it as a reference.
  28. NexusOwl

    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    I started this: http://forums.phoenixrising.me/index.php?threads/working-on-a-aminoacids-rich-low-carbohydrates-diet-based-on-faulty-pdh.48491/ I would love if some of you came to discuss
  29. NexusOwl

    Working on a Aminoacids rich, low Carbohydrates diet based on faulty PDH

    After the recent findings in the pyruvate dehydrogenase enzyme and the conclusions for dietary treatements, I'm working in a affordable diet to get all the aminoacids cited by this analysis made by MEaction...
  30. NexusOwl

    Spain: ME/CFS situation in Spain

    Thanks for the info and the funding, doctor! These are great news, but I'm a little bit concerned about finding severe patients in Spain, becasuse some leading doctors in the "CSS" have been spreading the believe of CFS/ME not really having a severe spectre (not the one we use when we talk...