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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. helperofearth123

    Crazy idea - double infect yourself to remind your immune system to switch off

    I had a crazy idea. I have ME/CFS triggered by a lyme infection. The lyme infection appears to be long gone but my symptoms are not. I had the crazy idea that what if I were to get infected with Lyme disease again, treated with antibiotics after a few days or so, and see if my immune system...
  2. helperofearth123

    Major Crash - Please help me!

    Hi so sorry to hear your problems are still continuing. I had POTS diagnosed and tried their treatments, salt loading (you mentioned you are trying) and compression stockings and there was also a POTS drug but they wouldn't prescribe me it because my POTS wasn't bad enough. The salt loading...
  3. helperofearth123

    GET makes me feel better?

    Sorry to hear you are having such as awful crash! Well done on figuring out the POTS stuff out and discovering its good to circulate the blood manually a bit - I can only applaud that. That's not GET though! - mainly because you did it on your own. Figuring out your own energy limits is not...
  4. helperofearth123

    Prof Esther Crawley speaking to paediatricians in Glasgow on managing ME

    Unbelievable. When a child has a scratch on their knee you can just kiss it better and the placebo makes them believe the mild sting of pain has gone away, so that is fine. When they actually have a neuroimmune condition and you are treating them with placebos rather than researching into what...
  5. helperofearth123

    Lactic acid buildup?

    Could be circulation related. Moving the blood around manually by moving around a bit could be why it feels a little better to move around. Basically the bodies natural energy input to waste product output is done through circulation, so if thats not circulating properly it will cause you to...
  6. helperofearth123

    Severe PEM

    If PEM has been triggered by accident it could warrant some pain relief. I wouldn't know which type is safest to prescribe but GPs can prescribe pain relievers, though regular ones for PEM wouldn't be a good idea, in this case it looks like it was accidentally triggered so you definitely...
  7. helperofearth123

    New paper on ME in Psycho Research by Esther Crawley Jan 2018

    Correct me if I'm wrong but it seems there is no control group? It seems to be saying that those who were less severe (i.e. fewer symptoms) are more likely to recover in 1 year than those who are worse. Some people with ME/CFS do recover with no treatment so it looks like meaningless results...
  8. helperofearth123

    Diazepam Experiment

    Interesting, if I miss a full night sleep my brain fog would be slightly better too but not much. Though you would expect to feel awful after missing a full night, yet I usually feel slightly better. TIME FOR AN UPDATE Have had continuing very positive results with valium right before bed...
  9. helperofearth123

    Diazepam Experiment

    Interesting. I tried 5-htp years ago and it made me feel worse. However I was also prescribed amitriptyline years ago at a the start of my illness and felt a little better from it and I think that increases serotonin so unfortunately that explanation doesn't seem to make any sense!
  10. helperofearth123

    Diazepam Experiment

    I know that sleep is vital. This is not about a sleep aid to help me get to sleep. I usually sleep a full night and wake up exhausted. This is about *refreshing sleep*.
  11. helperofearth123

    Diazepam Experiment

    After the Rituximab study failed to find a treatment I started to try other things. I tried diazepam with fascinating and tantalising results, so far. Experiment in progress. I took 1 10mg of diazepam on day 1. I felt what you would expect, muscle aches completely gone and there was a very...
  12. helperofearth123

    Healthy food makes me worse...?

    All I can say is if I cook steamed vegetables, which I do regularly, if I don't quite cook them enough so that they are still a little bit hard then I feel completely exhausted shortly after eating them, even during the meal itself. I have no idea why but it is very noticeable and has happened...
  13. helperofearth123

    plan for no cure and hope you're wrong

    That sounds very unusual for ME/CFS. If it wasn't an allergic reaction what else could it have been other than as you say - bugs being killed? Not tempted to try a longer course? Not saying its worth the risk but that if theres an infection there its got to go somehow.
  14. helperofearth123

    plan for no cure and hope you're wrong

    The disease may not be currently curable but peoples minds can be changed about it being real. I'm sure you must have tried already but there is some scientific proof out there such as the IOM report (which maybe they should read if they haven't already). As for moving on, I suppose it depends...
  15. helperofearth123

    Rituximab Phase III - Negative result

    :cry::cry::cry::cry::cry::cry::cry::cry::cry::cry::cry::cry::cry:
  16. helperofearth123

    :New paper 10th Nov: Brain chemistry study shows CFS and GWI as unique disorders

    This sounds very interesting! It sounds like our microRNA diminishes after exercise when it is supposed to increase and that causes an excess of immune cells in the brain after exercise because one or more of the types of microRNA causes reduction in a type of immune cell (or it would if we had...
  17. helperofearth123

    New Subreddit for CFS research and speculation

    If only there was enough research going on to cram it full of stuff, we can dream!
  18. helperofearth123

    any new exciting research?

    What does this mean? There was another study that I thought showed that the problem was in the blood not the mitochondria after all and now this one is pointing out mitochondria again. Is the type of cell they are looking at being a blood cell of any significance?
  19. helperofearth123

    Comment by 'helperofearth123' in 'I don't want to die'

    Sorry to hear how awful it is, hang in there! You are a trooper. If you were suicidal pre-illness and now you are not, that is a very important type of life-progress. Good things can still happen to you in the depths of yourself while the illness churns away on the surface.
  20. helperofearth123

    New Scientist: Inside the clinic offering young blood to cure ageing

    If there was a UK clinic that did this I'd be up for trying it. Edit: Come to think of it, wouldn't any age healthy blood help?
  21. helperofearth123

    Clinical and cost-effectiveness of the Lightning Process for chronic fatigue syndrome

    Fair enough. I suppose I have hope that they aren't doing it 'deliberately' in that they might think these things actually work, because they think that ME/CFS is mental not physical and so because they think that, they think that it does work. Its possible they are just woefully ignorant and...
  22. helperofearth123

    Clinical and cost-effectiveness of the Lightning Process for chronic fatigue syndrome

    Of course abuse is always unacceptable. But calling something a "criminal scam" is not abuse if that is what is happening. In which case, for me to not use that term someone would need to convince me rationally why that is not what is happening because that is my current conclusion. It's...
  23. helperofearth123

    Clinical and cost-effectiveness of the Lightning Process for chronic fatigue syndrome

    I have emailed the ring leader of this criminal scam and await her reply. If my views expressed in my previous post in this thread are wrong, she should easily be able to explain why I am wrong and how she is not scamming the NHS. In which case I would be happy to change my mind and move on...
  24. helperofearth123

    Ritux and PEM

    I think of CFS as a kind of permanent PEM. Just existing takes energy and there isn't enough so we are always trying to recover just from sitting still doing nothing.
  25. helperofearth123

    Video by Dr Myhill: Time to stop the abuse of CFS patients

    I agree. While it is great to have more attention shone on the criminal fraud that is PACE, from what I can see her treatments aren't based on science. For years she has been advocating mitochondrial failure as the cause, whereas it seems to be something in the blood (from the latest...
  26. helperofearth123

    Chronic fatigue syndrome and idiopathic intracranial hypertension

    Two of the researchers of this study have tried treatments for this on me. I had a lumber puncture, and I felt better for a few days after that. They said that this suggests I have brain inflammation as the drained cerebral spinal fluid creates more space for the brain. But there was no way...
  27. helperofearth123

    GETSET (white) in Lancet 22/06/17

    So 1 in 5 patients can have a small improvement by doing GET. Not exactly a very positive result. It can probably be explained by some sufferers under-estimating how much exercise they are capable of as when your energy goes down a lot because of this illness you have to estimate your new...
  28. helperofearth123

    Happy Poem

    I wrote this poem today after a brilliant weekend away on a Buddhist retreat (you may notice it is totally different from my last very negative poem!). Ok here goes: Watering the soul, in a garden of happy people. Soil for the heart, in a choir of singing friends. Sunlight for the...