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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. Lillybelle

    I'm 100% better, can function again

    Modafinil causes me severe crashes and even a couple of days can impact my immune system for months. It activates the sympathetic nervous system so increase heart rate and nervous system function as well as cognition. Most researchers advocate pacing and keeping heart rate below a certain...
  2. Lillybelle

    Advice on Equilibrant?

    @halcyon thankyou very much for your helpful info. Are you feeling better at all? If so by how much what symptoms have improved for you? How long have you been on it? Will you have another test at the end of the year to see of the EV has gone? Thanks
  3. Lillybelle

    Advice on Equilibrant?

    @halcyon @SOC thanks for your input. No such thing as Cytokine testing over here, or not that is available for patients. I know NKC tests are available but told by the doctors here doesnt really help the situation to know this. And most ME/CFS patients have this low NKC function. I would like...
  4. Lillybelle

    Advice on Equilibrant?

    @halcyon did you have enterovirus test prior to taking the Equilibrant? If so what type of test would I ask for can my GP do it? None of the specialists I know here in Aus would do any enterovirus tests. What does the Inosine do?
  5. Lillybelle

    What do you have for Breakfast?

    I try to pack as many vitamin/mineral giving foods as I can. Not usually that hungry so I eat about 10.30 am after a short walk with my dog. Green leafy vegetables have the densest amount of nutrients per calorie: they have all the major vitamins B, A, C and K. Dr. Wahl's recommends at least 3...
  6. Lillybelle

    ME/CFS and Tregs - confused

    Great blog on understanding histamine. I actually I understand it now I think:) Thanks
  7. Lillybelle

    severe anxiety... reallyreallyreally need some help :(

    Hi @Kenshin Baclofen is prescription only. But some of the top ME doctors prescribe it. You would need to get a doctor who understands ME/CFS and then your GP can provide repeats. Maybe discuss with yr GP. Its inexpensive here (Aus) and you can get 25 mg and use a pill splitter.
  8. Lillybelle

    Do I still have ME/CFS if immune deficiency found?

    Hi @Adster good question! Underlying the immune deficiency diagnosis is an assumption that the definition of Me/CFS is an immune disregulation and/or disorder. I happen to believe it is! But many researchers clarify it as a range of other disorders such as viral/bacterial infections, Gut...
  9. Lillybelle

    severe anxiety... reallyreallyreally need some help :(

    @alice111 sorry you are feeling so bad.Use. B12 b12 b12 Merhylcobalamine NOT cynacobalamine. Ask yr GP or ME doc for Baclofen which is NOT an addictive anti anxiety drug but is a relaxant.It works on GABA B receptors and dopamine. Relieves gut probs muscle pain and slows you down. You only...
  10. Lillybelle

    NCNED Qld seeking interstate PWCFS for research project

    I have a an appt with the CFS Queensland clinic on March 6. Booked over 1 yr ago. Originally was for June but there was a cancellation. I'm from Melb so will fly up the day before. I will let you know how I go with the clinic and will ask about future trials and whether we can participate...
  11. Lillybelle

    I Remember Me/Stephen Paganetti

    Has anyone heard anymore about Stephen since this post?
  12. Lillybelle

    Australian government extending age for "crackdown" on DSP recipients

    Let me explain again @Heaps Real the Mason Research Grant is NOT from an individual it is from a massive corporate Trustee the ANZ trustees. http://bulletin.research.unimelb.edu.au/schemes/view/mason-foundation-national-medical-program-alzheimers-disease-and-chronic-fatigue The GRant name is...
  13. Lillybelle

    Australian government extending age for "crackdown" on DSP recipients

    @heapsreal the reality is Griffith is majorly funded by the Qld Govt Smart State scientific govt funding to the tune of 4million. The private funding you discuss is $800,000 and is an ANZ trustees grant. So not individuals but a trustee investment from Mason Research Grant of $800,00. We need...
  14. Lillybelle

    anxious and wired, need some help please!

    Hi @alice111 Sorry to hear about the anxiety. I used to suffer from it all my life before I got ME/CFS. Now very little except more of a frustration anxiety. Anyway suggestions: 1. Meditation: breathing single pointed meditation focussing on the breath. You can get lots of phone apps now that...
  15. Lillybelle

    Bains Dérivatifs--Cold Water Therapy

    I did cold water therapy for around 9 months as it was suggested as an hpa regulator by the specialist. On the plus side I developed more courage than I knew I had. Going into the sea in midwinter Melb/ Australia gets down to 5 degrees air temp in winter , windchill can go 10 degrees below...
  16. Lillybelle

    Gaba agonists- anyone tried them?

    Hi Knackers 25mg to start would knock you flat on yr back to start. As I said you need to start slower and build over about 1 month. They are not like paracetamol. There are 2 difft types of GABA. Baclofen is GABA B not A and is completely the opposite to the modafinil. Modafinil is a central...
  17. Lillybelle

    ME-prof. Gottfries interviewed about Staph vaccin, B12+ folate treatment a.o.

    Hi. @Helen thanks very much for posting these. It's great to hear that finally some double blind trials are being done with b12 and methyl folate. This gives me great comfort as I've been on this protocol a while now albeit sublingual B12 and the biweekly shot(doc won't allow anymore than 1...
  18. Lillybelle

    Gaba agonists- anyone tried them?

    @knackers323 can I ask how much you take how many times per day? How long did it take you to get to that amount? It can just be about getting that right dose for you. If you Google Baclofen forums their are realms of people discussing Baclofen and associated drugs/ to manage that sleepiness...
  19. Lillybelle

    Gaba agonists- anyone tried them?

    Men can eventually tolerate more than women. I think it took me about 1 month to tolerate 25 mg per day. I now take this in one dose late afternoon. I'm around 60 kgs.
  20. Lillybelle

    Gaba agonists- anyone tried them?

    Hi @knackers323 I would highly recommend Baclofen. It's highly effective as a cns relaxant. Works on exactly the same dopamine receptors as alcohol without the damaging and gut poisoning effects of alcohol. Relaxes right muscles gives some emotional relief if anxious or uptight. Has a...
  21. Lillybelle

    Melbourne Australia, Sept 13 2014 Exploring the puzzle that is ME/CFS and related neuroimmune dise

    Thanks @Sasha good question!!! I think it is quite a small room and event but I shall call and ask them. It would be good for Professor Gradsniks research and her cfs clinic at Griffith Uni as well as international patients. I have a wait listed booking for her clinic in Qld although the appt...
  22. Lillybelle

    propax with NT factor

    Agreed the cfs studies are not that strong. However they are noted as being pilot studies which do not necessarily need control groups and or randomisation. However the cancer trials are well designed. See below Reduce Effects of Chemotherapy PROPAX use leads to fewer side effects in cancer...
  23. Lillybelle

    Melbourne Australia, Sept 13 2014 Exploring the puzzle that is ME/CFS and related neuroimmune dise

    For those of you in Australia (Melb) or Victoria this seminar has two of the top ME and Lyme Disease Researchers speaking as well as treating GP's Join world leading researcher Professor Sonya Marshall-Gradisnik, ME/CFS and Lyme medical expert Dr Richard Schloeffel together with highly regarded...
  24. Lillybelle

    propax with NT factor

    Their is definite evidence for NT Factor but ONLY as a proprietary blend Here: http://www.iherb.com/Nutricology-NT-Factor-EnergyLipids-Powder-150-grams/ Contains: NT Factor Proprietary Blend (soy lecithin extract) Containing: Phosphatidic acid (PA) Phosphatidyl-choline (PC)...
  25. Lillybelle

    Dr. Rind's latest revelations about "adrenal fatigue"

    Here's the evidence on adrenal fatigue: one paper: So let’s look into the medical literature on adrenal fatigue. There’s no entry in Dorland’s medical dictionary, nor does the ICD classify it as a medical condition. Pubmed lists only one relevant paper which is a review by two naturopaths, and...
  26. Lillybelle

    Dr. Myhill- outcomes of treatment -good,bad,indifferent (poll)

    As I'm not in the uk I'm not being treated by her per se. However am following her and richs methylation protocal. And have read a good deal of her site research papers and views on this disease and others. Whilst I don't think she has all the answers as a GP she echoes much of the nutritional...
  27. Lillybelle

    Radio Show: The Cutting Edge of Health and Wellness Today (Drs. Nathan and Teitelbaum) Fridays 2-3

    Yep study was completed and published the only one by Rich that I know of. However it was a pilot study of 30 people over 6 month period. Unfortunately I don't think Neil Nathan has gone on to any larger study's on this subject. In fact this is the only study of Nathan's I can find. I think he's...
  28. Lillybelle

    Radio Show: The Cutting Edge of Health and Wellness Today (Drs. Nathan and Teitelbaum) Fridays 2-3

    A pilot study is for proof of concept and to set the direction for a larger scale study. It may include a control group but does not need to as a pilot study.It can do the following for feasability: Table 1 Aspects of Feasibility that Can be Examined with a Pilot Study Study...
  29. Lillybelle

    Australians - Survey for Disability Australia about cost of disability

    Thanks Sean
  30. Lillybelle

    Radio Show: The Cutting Edge of Health and Wellness Today (Drs. Nathan and Teitelbaum) Fridays 2-3

    @Sushi thanks! Isn't the internet great hopefully anyone in the world will get access. @IreneF I d'm not sure about Teittlebaum but I know Dr Nathan was involved in the Methylation study in 2009 with Rich Von K...