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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. Mette (PhD student UK)

    A few questions from the PhD student..

    Hi Esther12, I’m sorry for not responding to your post. This was not my intention, but for some reason, your post must have slipped through. But thank you for posting again. Must say, this is amazing stuff, and somewhat unbelievable... but then again... I can easily see how one could do a whole...
  2. Mette (PhD student UK)

    A few questions from the PhD student..

    Hi Lotus97, you seem to know a lot about the treatment protocol and the supplements – have you studied genetics and methylation? How do you sense make of all these different supplements? And how do you know which to take first? And when to add new ones?
  3. Mette (PhD student UK)

    A few questions from the PhD student..

    Hi Brenda, I’m sorry to hear about your family. It must be tough going through this alone, but I’m glad you find support here at PR. It seems it’s very tricky to figure out the right dose of supplement. Does it all come down to trial and error, as I’ve seen others mention? Where do you buy...
  4. Mette (PhD student UK)

    A few questions from the PhD student..

    Thank you Brenda for sharing your story. I am curious to know how your family and friends have responded to your test results, and what your GP says when you show her or him the 18 genetic mutations. Could you explain a bit more about how you organise and work out your treatment protocol? I’m...
  5. Mette (PhD student UK)

    A few questions from the PhD student..

    Thanks ukxmrv, Yes, this point is important. And because chronic illness fluctuates and is multiple and diverse, it shouldn’t stop us from understanding life with chronic illness. Yes, this reminds me of the idea of the ‘survival of the fitting’, which on one level can be considered...
  6. Mette (PhD student UK)

    A few questions from the PhD student..

    Could you perhaps elaborate on what it means to you? Thanks.
  7. Mette (PhD student UK)

    A few questions from the PhD student..

    Thanks Sushi, In relation to pursuing gene tests only leading to a specific treatment, how do you work this out? With help from your doctor, PR and/or on your own? I’ve noted not to include comments from you in my research. Overall, it’s not my intention to extensively quote from PR, but in...
  8. Mette (PhD student UK)

    A few questions from the PhD student..

    Hi everyone, It’s been a week’s time since my last post - I’ve been moving house during the Easter break and been away for a few days. But thanks for your comments. To Sushi, of course you do not want to “get away”, but seek support and understanding which, as you write, everyone needs. If I...
  9. Mette (PhD student UK)

    A few questions from the PhD student..

    Thanks everyone. I understand the problematic with acceptance, and how you come to PR to get away from the “normal” world, as you write Sushi. A close family member of mine has also experienced these same kinds of problems with acceptance from her GP as well as others – you know, “she looks...
  10. Mette (PhD student UK)

    A few questions from the PhD student..

    Thanks Heapreal. To follow up on your last point about acceptance and PR, could you maybe explain a bit more what you mean by not fully accepting it (chronic illness?) as a reason to come onto PR?
  11. Mette (PhD student UK)

    A few questions from the PhD student..

    Thank you Mark. I can only imagine your struggles and frustrations. I appreciate your point about what’s normal – and especially as you write when it comes to an illness such as ME/CFS that fluctuates. There perhaps is no normal, but only what is in a given moment. You mentioned that some...
  12. Mette (PhD student UK)

    A few questions from the PhD student..

    Hi ukxrmv, So, I measure my recovery in terms of how I feel measured against what I sense as normal for me. But generally, I don’t think about this much when I’m sick – I just want to get better. But to give you an example: Last time I had the flu, when I felt like I could go for a run without...
  13. Mette (PhD student UK)

    A few questions from the PhD student..

    Thank you for your comments and questions, ukxmrv. I understand your concerns about the presence of a researcher at the forum, and the issues you rise about feeling safe and listened to. I surely do not want you to feel unsafe about my presence and that is also one of the reasons why I am...
  14. Mette (PhD student UK)

    A few questions from the PhD student..

    Thanks for your comments Patrick (and thanks to all of you - highly appreciate it!) About the reference to the past, I’ve seen people refer to this, and I wanted to hear your thoughts on this, also to validate my observations. But as others point, referring to one’s former self is not the...
  15. Mette (PhD student UK)

    A few questions from the PhD student..

    It was perhaps a rather provocative way of writing, and I surely did not mean to be insensitive. I cannot personally relate to what it is like living with ME/CFS and the sense of loss you are experiencing, but I know about some of the struggles since a close family member of mine lives with...
  16. Mette (PhD student UK)

    A few questions from the PhD student..

    In terms of interpreting the Genetic Genie results, I am trying to read up about the effects of each of these genes (there is some info on about this on the heartfixer site), but it takes a long time to get to grips with it, as it is very complex, so I am hoping that some of the experts on this...
  17. Mette (PhD student UK)

    A few questions from the PhD student..

    Thank you all for your comments. Heapsreal, reading the Energy Index point score it is interesting to note that recovery starts with point 6... Also one might question what normal is. If 9 is full sedentary workweek, no naps, some social activity plus exercise approx. ½ to 2/3 normal without...
  18. Mette (PhD student UK)

    A few questions from the PhD student..

    Thanks Ember for linking to the document on the international consensus criteria. I can see how this kind of description could be useful for diagnosis and personal baseline. But I wonder whether you also experience ME this way and whether relating to the past and one’s pre-morbid activity level...
  19. Mette (PhD student UK)

    A few questions from the PhD student..

    Hi all, It’s been some time since I’ve posted on the forum, but not to say I haven’t been here at PR – in fact I have been checking in on what has been going on, and I was particularly sad to hear about Richvank (my condolences to his family and friends). I’ve been doing a lot of reading...
  20. Mette (PhD student UK)

    Doctoral student from Lancaster University at Phoenix Rising Forum

    Angela, Wow! This is truly an amazing story, and I’m very happy to hear that you and your kids are doing well. And thanks so much for sharing. I’m wondering about the gene and biochemical therapy you’ve gone through. What kind of therapy is it? I understand that you can take RNA supplements...
  21. Mette (PhD student UK)

    Doctoral student from Lancaster University at Phoenix Rising Forum

    I've noticed some of you talk about usefulness. In your opinion, what does it mean that genetic testing is useful? I also have a few other questions: What made you decide to get tested? What did you expect from the test results? What has changed from before to after the gene test? Mette
  22. Mette (PhD student UK)

    Doctoral student from Lancaster University at Phoenix Rising Forum

    Thanks for your comments, and to answer your question Jarod, I’m very interested in how we live with science and technologies, and in particular, various kinds of personal health data. My view is that data is not just data, but data, so to speak, is ‘lived’ in many different ways, and we need to...
  23. Mette (PhD student UK)

    Doctoral student from Lancaster University at Phoenix Rising Forum

    Hello Everyone! My name is Mette and I’m a sociology PhD student at Lancaster University in the UK. I’m carrying out research on direct-to-consumer genetic testing where I’m looking into how individuals make sense of and engage with genetic data. I do not have a background in genetics but in...
  24. Mette (PhD student UK)

    Doctoral student from Lancaster University at Phoenix Rising Forum

    Thanks everyone for your comments. Getting to know how the forum works.. To Esther, Yes, I know there are issues around recognising CFS as a serious illness, and the same goes for Fibromyalgia. A family member of mine had her troubles with her doctor, and even friends. To user9876, I agree...
  25. Mette (PhD student UK)

    Doctoral student from Lancaster University at Phoenix Rising Forum

    Hi Esther, To my knowledge, there are no genetic testing that could diagnose CFS but there seems to be a number of genetic mutations associated with CFS, such as the MTHFR mutations. From what I can tell, the direct-to-consumer genetic testing company 23andMe tests for some of these mutations...
  26. Mette (PhD student UK)

    Doctoral student from Lancaster University at Phoenix Rising Forum

    Hello Everyone! My name is Mette and I’m a sociology PhD student at Lancaster University in the UK. I’m carrying out research on direct-to-consumer genetic testing where I’m looking into how individuals make sense of and engage with genetic data. I do not have a background in genetics but in...