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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. Indigophoton

    Low-dose Naltrexone

    I now take 4.5mg twice a day, and find it very helpful. I consulted with the GP in Glasgow connected with Dicksons Pharmacy, someone with good knowledge of LDN in a range of conditions. He actually said that 4.5mg seems to be the sweet spot for hundreds of thousands of patients, but that twice...
  2. Indigophoton

    Determined to walk on her wedding day

    Jessica and her hubby and this story were featured on BBC South East News last night. They made it clear that Jessica had massive support to enable her to achieve her dream ("people looking after every part of my body" as she put it) and one of the main reasons for choosing the church in which...
  3. Indigophoton

    Useful ergonomic laid back chair

    He says in the video he is using a Lafuma chair - these are widely available for less than £150, and there are many equally good generic equivalents for £30 and up. The cheaper ones tend to be made out of steel rather than aluminium, so are heavier, but otherwise equivalent. The arm, he says...
  4. Indigophoton

    Mitochondrial and Energy Metabolism Dysfunction in ME/CFS — Myhill, Booth and McLaren-Howard Papers

    Yes, thanks, I need quite a bit of magnesium. I think I'm at the optimal dose: any more and it makes me weak(er) and sleepy. Any less and I start getting chest pains. So it's a fairly easy one to keep in balance. Yes, it would be interesting to know if anyone else who identifies themselves...
  5. Indigophoton

    Mitochondrial and Energy Metabolism Dysfunction in ME/CFS — Myhill, Booth and McLaren-Howard Papers

    I had this test done in 2008, when I was considerably less severe than now. I posted the results in another thread It looks like this - The annotations are by Dr McLaren Howard. Presumably the figures would be worse now, if they accord with severity. I've got too much brain fog to follow...
  6. Indigophoton

    FITNET: BMJ Article vs AYME Statement, both published 1 Nov 2016

    (Long post) I received a full copy of a BMJ article via email from an ME charity forum/list, so I assume it's OK to post. The article was published on 1st November. On the same day, AYME published a statement intended "to address some concerns and misperceptions" about their involvement with...
  7. Indigophoton

    How likely is it a UK GP will help me get these tests and treatments?

    Hi markie, not sure you'll have much luck getting a GP to either carry out or interpret most of those. You might consider the Optimum Health Clinic. They generally get a bad rap on here because of their psychology side, but you can access the nutritional/testing side without having to have any...
  8. Indigophoton

    LDN, opiate responders, and questions

    1. Yes, the LDN is also helpful. 2. LDN is not addictive or dependency-forming as far as I know. In fact at full dose (50mg/day) Naltrexone is used to help stop opiate addiction. But best check the literature or wait for someone with definite knowledge to be sure. 3. Yes, in my experience LDN...
  9. Indigophoton

    I hate this life

    Most councils offer a bulky waste collection option. Cornwall will take up to four items including a fridge for £22. If you can't get the fridge outside it looks like they'll help with that. Some councils offer one free bulky waste collection per year to people on certain benefits, so might...
  10. Indigophoton

    Should sickness/disability benefits be conditional on adhering to treatment (UK) ?

    This is a really good article. The attitude of the British Psychological Society on this matter sounds incredibly....sane.
  11. Indigophoton

    Does Low Dose Naltrexone (LDN) reduce inflammation?

    Just a thought - it's possible that the benefits of LDN in ME are down to its antagonism of the Toll-like receptor 4's found on microglia, which modulate the body's response to inflammation. The opiod activity may not be the key. For myself, I am finding LDN helpful, but I haven't noticed any...
  12. Indigophoton

    Simon Wessely in New Scientist

    Eh? Fair enough to have a hypothesis, but when it's shown to be wildly wrong then a true scientist goes with the evidence, not the idea. Perhaps he'll update his website now...
  13. Indigophoton

    Book published this week in UK referring to ME as psychosomatic

    It's the won't look through the telescope problem: 'Course, the evidence won in the end :cool:
  14. Indigophoton

    Doxycycline - should I take it?

    Not to go off-topic, but just to note that VSL#3 has been available in the UK again since early March.
  15. Indigophoton

    Class IV lasers

    Might be a tad worrying to be presented with one that did...
  16. Indigophoton

    Microglial Inhibition by LDN.

    Unfortunately studies on LDN seem to be few and far between in general, and on the individual isomers pretty much non-existent. The Clinical Trials website currently only has five open trials involving LDN. Jarred Younger has a trial running at the mo, due to complete in June 2015, looking at...
  17. Indigophoton

    Microglial Inhibition by LDN.

    Thanks for replying. I am taking the LDN in liquid form (tabs dissolved in distilled water) and have opted to hold the dose under my tongue until it is mostly all absorbed - doing it this way is supposed to lessen the risk of gastric effects, but I guess it also means the drug could start...
  18. Indigophoton

    Microglial Inhibition by LDN.

    Timely post for me: I have just started LDN (day 9 today) and, contrary to my expectations, have so far found that, on days where I notice effects, I feel better while the opiod receptors are blocked than when they are released. The difference is enough that I had actually wondered whether...
  19. Indigophoton

    Need opinions on four supplements (PQQ, ALA, B-5 and L-Carnitine)

    I recently started PQQ after this thread brought it to my attention @Gingergrrl (thanks!) - nothing at first, but after about seven or eight days there was a sudden jump in my cognitive function - memory much better, information processing improved, comprehension and recall all quite noticeably...
  20. Indigophoton

    Huge improvement in two hours

    Grigor, I'm using this one.
  21. Indigophoton

    Huge improvement in two hours

    Yes, I'm still taking it. The benefits make it well worth the cost. It's impossible for me to say whether it has cumulative effects, but it seems reasonable to think that anything that helps normalize immune function is making a worthwhile long-term contribution, and helping to optimize the...
  22. Indigophoton

    Huge improvement in two hours

    I got good results, see post #142. I did tag you at the time to say thanks.
  23. Indigophoton

    Fatigue: late night or early morning type?

    Hi Gingergrrl, the testing was done at Acumen Lab, I will PM you some details. The only suggested 'treatment' was some supplements, as mentioned in my post above. These did, and do, help, especially the D-ribose and magnesium. The D-ribose gets rid of the extraordinarily drained feeling that...
  24. Indigophoton

    Fatigue: late night or early morning type?

    Hi greg, I didn't follow a protocol as such, but took up the recommendation I was given to take D-ribose, Magnesium, CoQ10 and L-Carnitine to help with ATP production.
  25. Indigophoton

    Fatigue: late night or early morning type?

    For what it's worth, and at risk of adding to your information overload, I had a blood test done that purported to look at how well ATP was being produced and managed at a cellular level. The test apparently shows exactly this kind of very slow to charge, only ever partially charging, rapidly...
  26. Indigophoton

    IiME Planning Autoimmunity Research relating to Hypothalamus Antibodies

    I haven't seen this on here yet - apologies if cross-posting. I've just noticed that Invest in ME are planning research exploring antibodies that bind to the hypothalamus: Original at http://www.investinme.org/IiME%20Current%20Research%20Studies.htm This would seem to make so much sense...
  27. Indigophoton

    What are 'Psychological Processes"?

    I'm not sure what that means. As to exactly what is mind, what are mental phenomena, what has consciousness etc, the point is, we don't really know: these things need empirical research before clearly defined, scientifically rigorous, answers can be given. In the meantime there are lots of...
  28. Indigophoton

    What are 'Psychological Processes"?

    I'm a day behind here, and the discussion has changed direction a little, but going back briefly to where we were talking about consciousness and psychological processes, and their reality or origin, people in this thread may be interested in a talk given by B. Allan Wallace as part of the...
  29. Indigophoton

    9th Invest in ME International ME Conference, 2014 - Part 2: Pathogens and the Gut

    That's a great little film! My thanks too to @Mark for the reports, much appreciated. My copy of the conference dvds arrived today, they include Simon Carding's presentation (disc 2), so may have extra info to add to that captured by Mark.