• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Search results

  1. TreePerson

    B12: a simple 5-second poll for everyone

    I had a positive reaction when combined with other b vitamins that lasts a few hours. I can only take cyancobalamin. The other more bio available types are too stimulating.
  2. TreePerson

    My ME is in remission

    Thanks for your comprehensive and honest answer to my question Jen. I wish you all the best for your continuing recovery and return to full strength. What a journey!!
  3. TreePerson

    My ME is in remission

    Hi Jen Has PEM completely resolved? I realise it is not that long since your surgery and you must still be building up your strength. However if you do a lot of steps or stand for long time or have a particularly busy day do you feel tired and recover in a normal healthy way?
  4. TreePerson

    Video Update with Prof. Ron Davis April 2019

    So if exosomes are small then why has Ron considered them as a possibility? As he knows he is looking for something large? I would love to know more what his thinking is on the particle. And how likely they are to be able to isolate it. He seemed more interested in finding a drug but I would’ve...
  5. TreePerson

    Video Update with Prof. Ron Davis April 2019

    Anyone know what “a particle” is? What would be examples of particles in the blood? Is this the exosome?
  6. TreePerson

    First real cold since I got ME/CFS (6 years) and all symptoms temporarily disappeared

    I had a very rare cold over Christmas - probably only the 4th in 25 years. My ME symptoms improved considerably during the first 5 days (basically muscles - energy metabolism worked a lot better, I could do quite a lot more I had less orthostatic intolerance) but returned as the cold abated. I...
  7. TreePerson

    How Might Ativan, Clonazapem Increase Strength?

    @Seadragon I don’t get anxious from withdrawal but I do get exacerbated physical symptoms like muscle spasms and a weird bloodsucking emptiness in my veins. All over body weakness. I actually think these symptoms are the ME but the benzos mask them and then they come back with avengence when I...
  8. TreePerson

    How Might Ativan, Clonazapem Increase Strength?

    Hi @Seadragon could you explain more what you mean by terrible paradoxical reactions? I agree withdrawal symptoms happen even on very low doses. I find it a constant balancing act.
  9. TreePerson

    How Might Ativan, Clonazapem Increase Strength?

    I find the same thing - there is a definite marked strengthening effect. I have often puzzled over why this should be. I am severe and I have used them to be able to leave the house for urgent appointments. I also take them to help me out of a severe crash in order to avoid a downward spiral...
  10. TreePerson

    Association of T and NK Cell Phenotype With the Diagnosis of ME/CFS (Rivas et al., 2018)

    I tried looking at this but probably not well enough to understand it. I wasn’t clear whether they found that CD4 were higher or lower in pwme. I think they start by saying that previous studies have found higher levels in patients but I am not clear whether this was confirmed. I’m interested...
  11. TreePerson

    Has anyone had any experience with Seka Nikolic?

    I saw her in 2006 for a series of five consecutive appointments during which ( roughly speaking) she removed “bad“ energy and put in good energy. There was an immediate improvement in energy and functioning, I would say at least two points on the disability scale. The first day of treatment...
  12. TreePerson

    RH NEGATIVE

    I am.
  13. TreePerson

    Could a small amount of b12 be harmful?

    Thanks @Mary honestly not sure but worth a try.
  14. TreePerson

    Could a small amount of b12 be harmful?

    Hi @Mary Is there a reason for the veg juice being low sodium? I am also having difficulties with taking very small amounts of b12 causing me to crash badly. Yesterday energy literally vanished completely with no warning and am now feeling awful. I have been trying electrolytes with sodium and...
  15. TreePerson

    List of UK programmes for ME awareness week starting tomorrow 7th May

    @Hip Yes I agree it’s a view that runs through the whole of society but it’s also heavily reinforced by the BBC. It’s also a attitude that has played a huge part in the stigmatising of pwme. But you are right in saying that pwme are nonetheless creating positive outcomes through advocacy and...
  16. TreePerson

    List of UK programmes for ME awareness week starting tomorrow 7th May

    @Hip The impression the program left me was that a majority of people will not be seriously affected and will go on to recover. And that lifestyle changes can play a big role in this. But that there are also some very serious and unfortunate cases. This irritated me because a majority of...
  17. TreePerson

    OMF-Dr Davis research update (video!)

    Hi @Ben H Do you know whether the nano needle will be tested on people with depression in order to exclude the possibility that they give the same reading? It seems very important to me that it is, if it’s to be a marker of illness rather than a marker exclusive to ME/CFS.
  18. TreePerson

    Davis speech from Millions Missing. Some new info on metabolic trap hypothesis

    I have both those things. Regular swollen glands flu like feelings chills etc but I almost never get a full blown cold or infection. To me that would suggest an immune system permanently switched to high. But then really quite low CD3 and CD4 in recent tests.
  19. TreePerson

    Davis speech from Millions Missing. Some new info on metabolic trap hypothesis

    @Hip yes I have sometimes wondered if some of it's to do with survival of the fittest. How many of us would have survived our childhoods without antibiotics or with the protection provided by vaccinations against polio diphtheria whooping cough etc?
  20. TreePerson

    #OMFScienceWednesday-Severely ill Big Data Study

    Hi @Ben H Do you know if Dr Davis still has plans in progression to develop a more reliable way of testing for the RNA viruses? I think I’m right in saying these include enteroviruses and are ones that he so far hasn’t been able to test for? As these have historically been linked to ME/CFS...
  21. TreePerson

    List of UK programmes for ME awareness week starting tomorrow 7th May

    I just watched the Newsbeat documentary. Bits of it featuring the young girl Hannah talking to Caroline the UK Biobank nurse and the sections featuring Merryns family were excellent. However the rather bouncy presenter and the shots of her juicer undermine the seriousness of the illness and...
  22. TreePerson

    A Song for ME: Blowin' in the Wind

    Is it possible to share this? The link above doesn’t take me to YouTube so not quite sure how to do it.
  23. TreePerson

    A Song for ME: Blowin' in the Wind

    Oh I love this. It has made me cry. Well done everyone.
  24. TreePerson

    A Metabolic Trap for ME/CFS?

    @boolybooly yes I think the metabolic trip is triggered by the immune system. It seems to happen when a number of stressors happen together. Then it’s as if the immune system misfires in some way or the body begins to react inappropriately to the immune signals.
  25. TreePerson

    A Metabolic Trap for ME/CFS?

  26. TreePerson

    A Metabolic Trap for ME/CFS?

    It’s all very interesting and very puzzling. Some people feel that the ketogenic diet might have triggered their ME while others are using it specifically because they believe it aids recovery. By bypassing a blocked energy pathway? And then there is Dr Naviaux who saw a metabolic similarities...
  27. TreePerson

    The parents of Merryn, who died of ME in 2017, speak out

    Maybe it’s best to completely ignore him. Don’t give him oxygen of publicity etc. A lot of people have tried engaging with him and it hasn’t helped. He is like a member of a dangerous cult.
  28. TreePerson

    Ben H on the guitar

    Lovely Ben. Really moving watching you do this. I really hope @NIHDirector pays attention.
  29. TreePerson

    OMFScienceWednesdays-The ‘omes’

    No I do not! Thanks very much for the lesson v useful :-)
  30. TreePerson

    Dr David Tuller: The Australian Situation and EC's new post

    I know it’s not funny but your comment did make me lol.