• 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. J

    Success on Valacyclovir at 3.5 Months!! - Plus some Questions...

    I've been on Aciclovir since beginning of August 2017. I take 400mg 3 times a day. I also take daily ~ 250mg Beta hydroxybutyrate, vit D and B12 injection self administered every two weeks. I feel that recurrent armpit throbs, shin bone aches, sore throats, and pains at sites of old injuries...
  2. J

    ALL countires please sign petition supporting the complaint to the GMC about the PACE authors

    I've just signed. Now showing 3K supporters. Whoooopeeee.
  3. J

    UK: Short, simple letter to your MP to ask them to attend the Carol Monaghan PACE debate on 20 Feb

    Plus last week I sent my experiences to Carol Monaghan. She got 100 responses in first 3 days. Brilliant! The more the merrier I feel.
  4. J

    UK: Short, simple letter to your MP to ask them to attend the Carol Monaghan PACE debate on 20 Feb

    Yes. I too have asked my MP to go. I'm optimistic because when I let him know about the Unrest screening he replied that if he couldn't make it then he would send a representative. So I think that is quite helpful.
  5. J

    The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis

    I know that the herpes viruses have been looked at for many years and the links have never been made. I feel there are many reasons for this ranging from the selection criteria of the subjects,the blood collection and storage methods,tissues selected for testing, the testing methods themselves...
  6. J

    Simon McGrath blogs: Mark Davis finds the strongest evidence yet for ME/CFS immune activation..

    Paolo....... all I can think to say is Wow. Many thanks for posting this. What an excellent post. Lots of info and lots of hope. So since I'm in UK.......begs the questions; 1) Will anybody be testing the ME Biobank samples like this to see if this work can be replicated? 2) Does the ME...
  7. J

    $1,000,000 donation to OMF!!!!!

    Whoooopeeee! A wonderful hope boost. Many "thank you"s to all those who made this happen. Blooming brilliant.
  8. J

    Success on Valacyclovir at 3.5 Months!! - Plus some Questions...

    Thanks @Binkie4 All the best to you too.
  9. J

    Success on Valacyclovir at 3.5 Months!! - Plus some Questions...

    It is good to hear about progress and changes. Thank you Stephano75 and 2Cor.12:9. I guess I am concerned that for sample sizes of 1 or 2 then statistical power and hence value maybe v low? My maths is not my strong part. So for what it's worth........ I'm recovering from flu. In a weird way I...
  10. J

    Ampicillin increases GLT-1 expression

    I find I get red skin rash reaction to amoxicillin after 3 to four days? Similar reaction I had to Septrin years ago back in 70s? Could these reactions be from reactivation of herpes viruses as in DRESS or DISS?
  11. J

    Fascinating and awesome useful science developments

    Yes, that's it! Brilliant references too. Have fun.
  12. J

    Fascinating and awesome useful science developments

    Nature. 2013 Jun 13;498(7453):236-40. doi: 10.1038/nature12172. Epub 2013 May 19. This is the citation so maybe use to search on NCBI. ? Good hunting.
  13. J

    Fascinating and awesome useful science developments

    I feel these papers have helped me realise the progress being made. https://www.ncbi.nlm.nih.gov/pubmed?cmd=historysearch&querykey=5 https://www.biorxiv.org/content/early/2017/09/24/137992 I realised that I get a bit obsessed about just ME/CFS research . I found these papers enabled me to...
  14. J

    Mestinon + Famvir - whoa!

    I too am interested in EBV and ME although brain fog stops me making much sense of it all. These I found caught my attention https://www.ncbi.nlm.nih.gov/pubmed/29225606 and https://www.ncbi.nlm.nih.gov/pubmed/28604802. It seems that there are few animal models for EBV and since the prevalence...
  15. J

    Medical gaslighting finally is being recognized by the mainstream press

    I feel that our problem stems from when bog standard tests come back within normal ranges , then the GPs in UK appear to not have the time or curiosity to wonder why. They refer us to various specialists if we are lucky but these specialists invariably don't have the time or curiosity either...
  16. J

    Jørgen Jelstad blogs about RituxME

    Very useful to read. Thank you for posting. It helped me to see more of the positives.
  17. J

    Success on Valacyclovir at 3.5 Months!! - Plus some Questions...

    Yes I am in the UK. No my GP said the CCG would not fund my referral to a different region to see a specialist Immunologist with 10 years experience treating ME/CFS. I went private. The first consultation cost £250 plus about £65 for three months supply of Acicclovir. I then discussed this...
  18. J

    Success on Valacyclovir at 3.5 Months!! - Plus some Questions...

    @2Cor.12:9 ....the very best of luck to you!
  19. J

    Success on Valacyclovir at 3.5 Months!! - Plus some Questions...

    Yes for first two or three months my energy levels seemed worse plus a few minor side effects. In my tin pot unprofessional view, for long time I'd felt I was using energy to keep latent viruses dormant. So when I tried too hard to improve, I went beyond my energy envelope and the viruses got...
  20. J

    Success on Valacyclovir at 3.5 Months!! - Plus some Questions...

    I too seem to be feeling some benefits from aciclovir at 400 mg 3 X a day. I started taking it at the beginning of August, had quite a dip but was determined to stay within my energy envelope as much as I could for the first three months since in my logic, since B cells get renewed after ~ 3...
  21. J

    Taking blood samples of donors every seven minutes aims to unlock the mystery

    This looks fascinating. I wonder if we can get any results? Maybe the reasons for not measuring PEM are about the ethics around causing harm? Just a guess to be honest.
  22. J

    Low Dose vs High Dose Antivirals

    I did try 400 mg 4 X a day but that just sent me dizzy so I scurried back to the lower safe level, since the lower dose helped with so many other symptoms. I'm the eternal optimist in that maybe with a little outside help ( ie anti-virals) my body can do it's stuff? Who knows but I'm willing...
  23. J

    Low Dose vs High Dose Antivirals

    Also there is Loebels et al ( PLoS One. 2017 Jun 12;12(6):e0179124. doi: 10.1371/journal.pone.0179124. eCollection 2017.) who believe that some people have problems with EBNA6 and so from my little understanding means these people cannot fully control EBV. I'm on 400 mg Aciclovir 3 X a day...
  24. J

    Top 3 Investigatory CFS/ME specialists in the UK?

    I have found Dr Bansal very willing to discuss the Biomedical Science of ME/CFS when I've had a private consultation with him. My GP/local CCG would not fund a referral. He is both an Immunologist and an Allergist. So maybe you could try e-mailing him your thoughts to see if he can help. I...
  25. J

    New UK Petition: Debate in Parliament the lack of an effective policy for the treatment of M.E.

    Yep signed and forwarded to family too. Fingers crossed as always.
  26. J

    How to live after giving up fighting?

    Hi Jasper, so much of what you wrote is so familiar and so touching. I eventually learnt to accept this thing (sometimes...) by realising how much of my precious energy I waste by being angry with what has happened. Then that quote "Would it help?" Also I know that there are many very...
  27. J

    Machine Learning-assisted Research on CFS

    Thank you for posting this information. Very interesting but very complex so it's taking me a while to get my head around at least the bits I can vaguely understand. I do love a challenge.
  28. J

    How to get Biomedical research results before GPs and Consultants?

    I thought I'd give update on my attempts to get GP practice updated in their approach to ME patients. I saw senior partner yesterday. In between I'd seen a CFS specialist in Surrey as a private patient since CCG wouldn't agree to fund it. The specialist has prescribed anti-virals and a few...
  29. J

    New research on brain mitochondria

    Ooooooops, this is what I meant Ann Neurol. 2017 May;81(5):641-652. doi: 10.1002/ana.24922. Epub 2017 May 4. Deoxycytidine and Deoxythymidine Treatment for Thymidine Kinase 2 Deficiency. Lopez-Gomez C1, Levy RJ1, Sanchez-Quintero MJ1, Juanola-Falgarona M1, Barca E1,2, Garcia-Diaz B1,3, Tadesse...
  30. J

    New research on brain mitochondria

    I was wondering if anyone has seen this ? https://www.ncbi.nlm.nih.gov/pubmed?cmd=historysearch&querykey=2 Has there been any studies on thymidine kinase 2 and ME?