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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. Legendrew

    August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis

    An emotive and touching article. Awareness and understanding is a hugely difficult which speaks to the importance of such articles and getting them out into the public domain.
  2. Legendrew

    Fluge & Mella's pre-trial study highlights life-changing potential of rituximab

    @Sasha It is indeed a good sign; I would say I'm 95% of my old self pretty much all the time now. I finished my first year of university in the academic year and managed 81% somehow or other and am currently enjoying a nice relaxing summer before returning in late September - with university...
  3. Legendrew

    Fluge & Mella's pre-trial study highlights life-changing potential of rituximab

    I realise this is somewhat late now but this is a really great article @Simon and @Sasha ! I've been trying to keep up with the Fluge and Mella story as best I can and this latest trial is certainly very interesting and promising in equal measure! The reporting on both a personal and scientific...
  4. Legendrew

    Ancient Remedy For Super Bug

    Near all modern treatments stem from age old knowledge and herbal remedies; people from years gone by knew what worked, they just didn't know why and how. All we do that they didn't is study these treatments more and concentrate the key chemicals to increase their inherent properties.
  5. Legendrew

    CFI Spinal Fluid study from Lipkin and Hornig is out.

    Very interesting stuff: I haven't been around much here and therefore am not fully abreast of ongoing studies what with university commitments nowadays, indeed i'm currently procrastinating when I should be writing a 3000 word essay, but this has attracted quite a bit of attention! As many other...
  6. Legendrew

    Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)

    Legendrew submitted a new blog post: Nitric oxide and its possible implication in ME/CFS (Part 2 of 2) Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and...
  7. Legendrew

    Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)

    Yeah, most of it is. Often the linked articles in turn link to a research paper. What I should do really is link to all the research articles directly for those interested in reading up themselves. As i said I try to keep these articles a little lighter to read but with something like this I can...
  8. Legendrew

    Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)

    You know, I did used to list them as references at the end of the text but I switched to linking in the body of the text for ease of access to internet browsers and because of this some get cut out but I think if I do an article similar to this in the future I'll go back to the old 'references'...
  9. Legendrew

    Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)

    The more I hear and read about nitric oxide the more and more important it seems to be for nearly every system in the body (something I believe I touch upon more in part 2/2). It seems to be one of those areas that there is a lot of buzz around in the scientific community and I can see why...
  10. Legendrew

    Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)

    I feel your pain but this is the modern world of science I'm afraid. For every result there are many different hypotheses that can be drawn and only further tests can then decide whether any of these hold any water and from there the hypotheses that do hold true have to be modified, retested and...
  11. Legendrew

    Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)

    Legendrew submitted a new blog post: Nitric oxide and its possible implication in ME/CFS (Part 1 of 2) Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it...
  12. Legendrew

    Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS

    I think you might be getting yourself a little muddled here; you are referring to a condition known as secondary hyperparathyroidism where the body and parathyroid glands are functioning normally and are reacting to either hypocalcemia, low vitamin d or something of the sort and are producing...
  13. Legendrew

    Pots and medication sensitivity...

    Thanks, I'll keep that in mind for the future. To be honest the full body numbness didn't hit me until the night-time; around 5-6 hours after the filling. It's very unnerving to wake up around 2am with near full body numbness!
  14. Legendrew

    Pots and medication sensitivity...

    My heart sometimes seems quite slow but then at random intervals will race even when I'm not doing anything. Whenever I feel at my worst I get a terrible racing heart upon standing up and sometimes even sitting up. I get some degree of chest discomfort at times too, likely from irregular heartbeats.
  15. Legendrew

    Do MEs cause CFS?

    I suspect I have a combination of both of these. I seem to be fine at times: almost normal but then I seem to flare up from viruses, stress (to which I am now very sensitive) or just doing a little too much physically or mentally. Strangely sometimes I can do all of these things and not flare...
  16. Legendrew

    Pots and medication sensitivity...

    Does anyone else suffer with terrible medication sensitivity as a result of POTS (I suspect I suffer with POTS alone given my symptoms)? I've had to start taking paracetamol for headaches as my old go to, aspirin, gives me the most awful stomach cramps and pain that I cannot take it anymore...
  17. Legendrew

    August 8th - What is the one thing about suffering with severe ME that the world needs to know?

    Legendrew submitted a new blog post: August 8th - What is the one thing about suffering with severe ME that the world needs to know? Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ... Long, lazy August afternoons. The sun...
  18. Legendrew

    Khan Academy: The Immune System

    The Khan academy is a great source of information. Their youtube videos proved very helpful to me when I was studying for my A-levels a couple of year ago
  19. Legendrew

    What is the one thing about suffering with severe ME/CFS that the world needs to know? Severe ME Day

    Thanks for all the great responses. I've begun compiling the responses and writing the article and will continue to do so over the next week. There's still time to make your response if you haven't gotten around to it!
  20. Legendrew

    What is the one thing about suffering with severe ME/CFS that the world needs to know? Severe ME Day

    Very powerful stuff, very hard hitting to me personally too. at my onset I had nearly 3-4 months of near constant nausea so I understand the nightmare it causes and the undue punishment of vomiting upon the hard work to eat food.
  21. Legendrew

    What is the one thing about suffering with severe ME/CFS that the world needs to know? Severe ME Day

    As many of you will be aware, we are fast approaching Severe ME day - 8th August. This year the content team here at Phoenix Rising plan to mark the event with something a little more personal and hard-hitting; an article focusing upon one simple question: "What is the one thing about suffering...
  22. Legendrew

    Peter Denton White/Queen Mary, University of London again refuse to release data from £5m PACE Trial

    They have nothing to fear in releasing the data supposing they have nothing to hide... If I'd done a trial that showed absolute recovery from ME/CFS I'd share every piece of raw data I could to ensure people could see the strength of my trial.
  23. Legendrew

    Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS

    Yes, I neglected to mention this in my article to avoid over-complication of the topic area but increasingly normocalcemic hyperparathyroidism is becoming a clinical entity. However it is worth mentioning that this may be as a result of co-morbid vitamin D deficiency which lowers intestinal...
  24. Legendrew

    Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS

    Legendrew submitted a new blog post: Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS Andrew Gladman puts hyperparathyroidism under the microscope, exploring what the disease is, how it can mimic ME/CFS in presentation and how it is treated. Chronic fatigue syndrome...
  25. Legendrew

    POTS Associated with Significant Symptoms & Impairment -- BMJ article & pop press response

    The more I think about my personal illness the more I suspect I suffer from a type of dysautonomia rather than ME/CFS. My main symptoms have been headaches, stomach issues, heat intolerance, fatigue and nausea; all of these have always been much worse in the morning. I've never experienced a...
  26. Legendrew

    Anyone tried prescription blue-blocker spectacles?

    Sounds like an interesting idea and I can see why it might work, anything is worth a try! I'm currently in the process of trying to sort of my somewhat terrible sleeping habits; 1am-1pm is not helping me I don't think not to mention I'm starting university again soon so I need to become...
  27. Legendrew

    Anyone tried prescription blue-blocker spectacles?

    I've tried plenty of different colors in sunglasses to try and ease my summer migraines/headaches (triggered by high intensity sunlight) but i've yet to find anything that worked. That said I've never heard of tinted lenses helping with insomnia.
  28. Legendrew

    Can you have POTS without the heart rate going up a lot?

    One thing that is interesting is that POTS and dysautonomia in general, unlike ME/CFS, is well documented to respond well to controlled exercise in the long run and also several types of POTS has a tendency to improve over time, I've certainly noticed that as my health has slowly improved so too...
  29. Legendrew

    Can you have POTS without the heart rate going up a lot?

    I think that dysautonomia (of which pots falls under) can present without heart rate abnormalities but it's such a misunderstood and newly emerging area that a diagnosis is unlikely to lead to treatment.
  30. Legendrew

    Has anyone been completely cured of CFS?

    The trouble here is that we are looking at an individual couple of cases whereas I was discussing the disease on a population level. It would be foolish to say that diseases cannot get better by themselves; many autoimmune conditions can indeed burn themselves out even ones where there is clear...