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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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Search results

  1. Fred1234567

    Weight loss and weight gain poll

    My weight loss was caused by food intolerances that emerged as part of ME/CFS. Once the food intolerance starts were identified I ate like crazy until all the weight came back on and then settled on the heavy side of normal.
  2. Fred1234567

    Carmine Pariante's MRC research award-Persistent fatigue induced by interferon-alpha

    Childhood stressors or not is immaterial what is needed is biomarkers? How can you pretend to know if childhood stressors are relevant when you don't even know how to distinguish the disease from other diseases with similar symptoms.
  3. Fred1234567

    Carmine Pariante's MRC research award-Persistent fatigue induced by interferon-alpha

    How hard is it for the Uk to study ME/CFS - the neurological disease with the weird metabolic characteristics and stress receptors as found by the USA and Australian scientists? The disease defined by the CCC and the ICC criteria needs independent studies until biomarkers are found. Once...
  4. Fred1234567

    Counter petition to the MEGA petition, brainstorming stage

    Charles why do you think it's a good idea to back MEGA - when Peter White and Ester Crawley are involved? Why do you think it's a good idea to back a study that hasn't stated it will use the CCC plus mandatory post exertional malaise or the ICC diagnostic criteria?
  5. Fred1234567

    Counter petition to the MEGA petition, brainstorming stage

    Support Invest in ME - who has a proven track record of choosing good scientists doing good research not CMRC. MEGA can't even say what diagnostic criteria it uses- not good. CMRC are gagged from commenting on each other's work- that's not how good science gets done. MeAssociation and Action 4...
  6. Fred1234567

    #MEpedia: Page on Exercise

    A great job to see people working on this and it will be a great resource. I'm thinking that this section could be about energy conservation and activity management of which exercise is one component. Why I think this is that exercise can't be separated from pacimg ie depending on how well you...
  7. Fred1234567

    Australia: MindFood: Misdiagnosing ME

    I have ME as per the International Consensus Criteria 2012 - I don't have CFS as per the Oxford criteria..or the Fukuda criteria as I have neurological and immune deficiencies and low killer cell function. I have ME/CFS as defined by the Canadian Consensus Criteria 2003. So what do I have? How...
  8. Fred1234567

    The Treatment Showdown : CDC Toolkit vs IACFS/ME Primer

    The Primer needs to cater for the severely ill as otherwise we will be forgotten. A section on how to minimise the impact of a hospital visit- eg use a bed trolley, wait away form noise, let carers do most of the talking ie minimise time with the patient. Dr's don't realise how much telliing...
  9. Fred1234567

    The Treatment Showdown : CDC Toolkit vs IACFS/ME Primer

    I agree Cort a list of suggestions/recomendations - More focus on the 25% of people that are severely ill, these people are so ill they often can't access health care and yet given the severity of their illness they need the most help. In my opinion if a treatment has/does help some ME...
  10. Fred1234567

    Would you take Rituximab

    It is so hard to know what to do. Rituximab has been described to me as hitting a walnut with a sledgehammer and yes it is not the perfect solution. But currently there is nothing better so depending on your level of health risk taking ... It is hard to know whether to take the risk of waiting...
  11. Fred1234567

    ME/CFS Demonstration in Australia

    You are inspirational. I think that the health care workers care but are ill informed ... That to me is the avenue of least stress and most productivity. It may not be correct and certainly is not what I always think but it is always my official line!!!!
  12. Fred1234567

    ME/CFS Demonstration in Australia

    Great Idea- I was reading Cort's stakeholders info and wondering how those of us in Australia propose to get our voices heard. I think it is a great idea...I am thinking we should start writing and requesting that ME/CFS research is included....!!! Maybe this is something we need to take up...
  13. Fred1234567

    Oxygen and saline- for symptom relief to be added into the Primer for ME

    I read Dr Cheney's comments on oxygen toxicity in ME patients but that is completely the opposite of my and many other patients experiences. Like all ME treatments what helps some does not help and or may harm others. In contrast I've had horrendous reactions/relapses due to conventional drugs...
  14. Fred1234567

    The Treatment Showdown : CDC Toolkit vs IACFS/ME Primer

    Wear pyjamas to Dr visits if you are severely ill!!! i.e. try to look as sick as you are!!! It does help!!
  15. Fred1234567

    The Treatment Showdown : CDC Toolkit vs IACFS/ME Primer

    A great site and a great review!! You've done it again Cort!!! The Primer is a great start BUT - needs to add non drug stuff and address the severely ill (maybe you don't have so many severely ill in the USA anymore as GET/CBT isn't so widely preached??). Oxygen and saline 2 very helpful...
  16. Fred1234567

    Tilt Table testing in Australia?

    Hi I hope you are better than when you wrote this. i have POTS and am in Australia no tilt testing for me but I did get an ECG done in my GP's office 1/ lying down and a second standing up the first was normal the second showed tachycardia and that was after 1 litre of IV saline. Maybe a...
  17. Fred1234567

    ME/CFS knowledgeable physician in Sydney?

    The Alison Hunter Memorial Trust is based in Sydney and maybe if the victorian based ME/CFS group hasn't a good list of Sydney doctors it could help.
  18. Fred1234567

    CFS specialists in New Zealand?

    Hi I would try to educate your local GP on the basis of info on this site...and research papers....I'm orig from down under and had a friend with ME 30 years ago who found NZ GP's very helpful and aware of the seriousness of ME. This site is fantastic and the new primer- add oxygen and IV saline...
  19. Fred1234567

    would it be rude to take info into doctor to read?

    Thanks for the name of a cheap electrolyte- I find they help but Endura that I've been using is expensive.
  20. Fred1234567

    Australian Specialists including Neurologists

    I had one MRI to rule out a weird cancer tumour and MS. I was very noisy and I went grey but as soon as I got back home started on oxygen and returned to normal colour.... I've not been recommended to have any more MRI's and would need a lot of convincing of the benefits of having another one...
  21. Fred1234567

    Australian Specialists including Neurologists

    Yes I am on both and they help me!!!! My GP gave me a prescription for oxygen and I hire an oxygen concentrator. I can tell when I am topped up with oxygen and don't need anymore. The oxygen helps stave off the crashes, reduces neurological symptoms e.g. spine tingles/shocks, painful finger...
  22. Fred1234567

    Australian Specialists including Neurologists

    'I've found that Australian doctors go to the NICE Guidelines from the UK as a cheat sheet!!!! I take the ICC and Canadian Guidelines and give them a copy...the ME/CFS support group based in Victoria will help anyone from any part of Oz and is a great resource. I have also been giving out...
  23. Fred1234567

    Travelling from the UK to see Dr Kogelnik

    Good Luck Scavo!!
  24. Fred1234567

    Rituxan reimbursement program

    Hi I figure there are 2 problems 1 getting someone to prescribe R and then paying for it unless a hospital can be convinced to take you on. Lots of nos so far and working through the specialists!! Best conversations with oncologist but getting it actually prescribed is not easy. Are you...
  25. Fred1234567

    Is there any evidence that deconditioning alone causes pain and fatigue?

    Amazing really isn't it we are all told that de-condtiiotng is causing the severe ME but no "evidence based medicine" or studies to demonstrate that patients with ME are actually deconditioned. We don't fear exercise....we know that exertion beyond our limits makes us worse and so we try to...
  26. Fred1234567

    Mabthera/rituximab from India/Israel

    Has anyone bought this drug from a "cheap source"???? If so would you mind sharing the how/where and the cost. Thanks.
  27. Fred1234567

    Retuximabi Now??

    I would be very surprised if there are not Dr's prescribing rituximab it is just finding them easier said than done but don't give up it seems oncologists are the way to go!!!!