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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. InitialConditions

    Dr Bansal consultation

    It was all virtual. I will email him.
  2. InitialConditions

    Dr Bansal consultation

    I dont think he even has my address (?)
  3. InitialConditions

    Dr Bansal consultation

    How does the private prescription work with Dr Bansal? Does he email them to you. I have not heard anything from him in nearly a week since my appointment.
  4. InitialConditions

    Where can you find rating fot the severity of your CFS.

    Google Bell CFS scale or Bell CFIDS scale
  5. InitialConditions

    Does anyone else get gradual onset crashes?

    I'm sorry to hear this. I am currently in a very similar position. I've gone downhill since late June and I'm not recovering. I'm even thinking about moving from amitriptyline to mirtazapine. What prompted this change in meds, and do you think it's helping? What doses?
  6. InitialConditions

    Urea and electrolytes blood test on the NHS UK. Do they actually test Urea?

    I'm looking at my GP Health Record and I have a figures for urea, sodium, potassium, and creatine. I would ask them. Different NHS labs in different trusts might do different tests as standard.
  7. InitialConditions

    combining fluoxetine and doxepine?

    I have been on and off low-dose amitriptyline (10mg) for a few years. It helps induce sleep, but I don't have severe sleep problems—but I can have insomnia when crashing. With these drugs, what works for one person can be awful for another. It really is trial and error. I just wanted to point...
  8. InitialConditions

    combining fluoxetine and doxepine?

    Have you considered low-dose amitriptyline or low-dose mirtazapine? They are known sedatives. I'm assuming you're currently on fluoxetine and want to add something else.
  9. InitialConditions

    correct sleeping position and orientation to improve on health

    I'm afriad this claim is a load of rubbish! The iron in the body is not magnetic (in the traditional sense). Further, Earth's magnetic field is so weak that the forces on blood iron are nowhere near the strength of gravity or even thermal motion in the blood. If the claim were true, we would...
  10. InitialConditions

    Weird sounds in my ear that comes and goes.

    This sounds like pulsatile tinnitus as that often sounds like a distant storm rumbling—it is caused by the sound of blood flowing turbulently through blood vessels. Does the sound 'pulse' slightly? The video below shows what it can objectively sound like. My pulsatile tinnitus subjectively...
  11. InitialConditions

    Abdominal rash - related to Chinese Medicine?

    Not an expert, but this looks like ringworm (or possibly another fungal infection) to me: https://www.mayoclinic.org/diseases-conditions/ringworm-body/symptoms-causes/syc-20353780 You have the darker perimeter and spots on the inside. Is it itchy, or scaly, at all? If it is ringworm, it looks...
  12. InitialConditions

    Dr Bansal consultation

    Thanks. How long did you have to wait? And did you have a virtual appointment?
  13. InitialConditions

    Dr Bansal consultation

    Thanks for sharing. Are you able to write how you went about getting an appointment with him? And perhaps give a rough idea of costs?
  14. InitialConditions

    New personal finding: PEM threshold related to activity level

    Yes, this.
  15. InitialConditions

    New personal finding: PEM threshold related to activity level

    But if you've been resting a month it's probably for a reason — your baseline is probably lower than average, so it's not a suprise you'll get PEM if you have a stressful day where you overexert. Likewise, if you've been steadily active for a few weeks, it's probably because you're not in a...
  16. InitialConditions

    Dr David Tuller: New Study Promotes “Bespoke” Hospital Rehab Program for Kids with ME/CFS

    It was last updated in 2020. It was due for update in June 2022.
  17. InitialConditions

    Heart Rate Variability Conundrum

    Alternatively, if the measurements are accurate, it might suggest some sort of physiological issue that means you are way outside the normal range.... Maybe you could discuss with a doctor. But I'd defninitely want to use a chest strap first.
  18. InitialConditions

    Heart Rate Variability Conundrum

    I can only imagine that there is some sort of measurement error. I've never heard of a HRV reading of 160, never mind 240. The usual range is 40–80, so your readings are significantly above that. Comparing between devices is tricky, for obvious reasons. The most accurate device (with...
  19. InitialConditions

    A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

    New PNAS paper from Ron Davis and team released ahead of print (not open access). https://www.pnas.org/content/early/2019/04/24/1901274116 ABSTRACT. There is not currently a well-established, if any, biological test to diagnose myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The...
  20. InitialConditions

    Strange mark(s) on skin. Rash? Overlying swollen vein / lymph vessel in neck

    I'm also not sure if this is a lymph vessel or a vein that I can feel. I saw a consultant about a permanently enlarged lymph gland on that side and she said lymph vessels do not exist! I know this to be false.
  21. InitialConditions

    Strange mark(s) on skin. Rash? Overlying swollen vein / lymph vessel in neck

    Thanks for the reply. Yep, very familiar with Perrin and his ideas. And yes he practises an hour from me. His theory to me makes some sense, but it is still 'out there', and there is little evidnece supporting his hypothesis. I have actually got so far as contacting the clinic, but had no reply...
  22. InitialConditions

    Strange mark(s) on skin. Rash? Overlying swollen vein / lymph vessel in neck

    This is a strange one. The photo shows some marks on the left side of my neck. Now this rash - if you can call it that - does not bother me. The reason I post is because the largest mark/spot (about a thrid of the way up the photo) lies directly over what seems to me to be a swollen vein or...
  23. InitialConditions

    Advice with thyroid panel test: Anti-Thyroglobulin antibodies

    Hi all, Another thyroid post! I am not overly familar with the science in this area, so looking for advice. I had a Thriva thyroid test recently. The results are shown below. The only thing flagged is raised Anti-thyroglobulin antibodies. The other levels are within range. The Dr giving the...
  24. InitialConditions

    Chronic fatigue syndrome: Suggestions for a nutritional treatment in the therapeutic approach

    Honestly, how the hell did this get published. This sentence alone is enough for rejection, because it proves the authors don't have a good grasp of what ME/CFS is.
  25. InitialConditions

    To Make Sense of the Present, Brains May Predict the Future

    https://www.quantamagazine.org/to-make-sense-of-the-present-brains-may-predict-the-future-20180710/?fbclid=IwAR3kA2TmAgnrIzRxch0nwdNtY9pfEKxgHOyQQnO9N5fpkiDRBPbLmCwk6F8 A controversial theory suggests that perception, motor control, memory and other brain functions all depend on comparisons...
  26. InitialConditions

    Any patients here with Obsessive Compulsive Disorder (OCD)? Naviaux Cell Danger Response

    i am familar with the wired but tired issue. not so familar with supplementation to manage it. can you expand...?
  27. InitialConditions

    Any patients here with Obsessive Compulsive Disorder (OCD)? Naviaux Cell Danger Response

    Hi all, I was wondering if anyone here is living with Obsessive Compulsive Disorder (OCD) as well as ME/CFS? I first developed OCD at 16, so long before any ME symptoms. I have not had treatment and have mostly kept it a secret. Luckily, it has remained mild--moderate and has never got severe...
  28. InitialConditions

    Video Dr Kaufman Diagnose ME/CFS - What criteria does he use?

    I think this was done in collab with ME Action so it probably resembles IOM criterea (call it SEID if you will).
  29. InitialConditions

    New #MEAction piece on Cochrane review of exercise therapy for CFS

    as far as I'm aware this was always a temporary withdrawal - i think people just got ahead of themselves.
  30. InitialConditions

    An elusive molecule that sparks multiple sclerosis may have been found

    https://www.sciencemag.org/news/2018/10/elusive-molecule-sparks-multiple-sclerosis-may-have-been-found "Our immune cells normally pounce on intruding bacteria and viruses. But in multiple sclerosis (MS), immune cells target the nervous system instead. Now, researchers may have pinpointed a...