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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. Goodness to M.E.

    And that's okay!

    I love this.......
  2. Goodness to M.E.

    Stop treating Myalgic Encephalomyelitis (ME) as chronic fatigue syndrome (CFS)

    I live in Australia and it is classified as: CHRONIC FATIGUE SYNDROME - unexplained fatigue ICD-10-F48.0 (Neurasthenia) MYALGIC ENCEPHALOMYELITIS ICD-10 G93.3 (Disease of the nervous system) I think it varies from country to country however for me, my 2 treating doctors used the ICC and...
  3. Goodness to M.E.

    Stop treating Myalgic Encephalomyelitis (ME) as chronic fatigue syndrome (CFS)

    These 2 documents: the ICC for M.E. and M.E. Hospital Booklet are very useful to understand how M.E. is different from CFS and to assist with appropriate diagnosis and treatment now. M.E. is a clearly defined disease and I do not see the need to change this. What is needed is education and...
  4. Goodness to M.E.

    Stop treating Myalgic Encephalomyelitis (ME) as chronic fatigue syndrome (CFS)

    This may help clarify the history and difference between M.E. and CFS.
  5. Goodness to M.E.

    Will S.E.I.D. be accepted as (be proven to be) valid?

    Well worth the read regarding the history of M.E. and why/how CFS came about.
  6. Goodness to M.E.

    Will S.E.I.D. be accepted as (be proven to be) valid?

    I agree, changing the name when M.E. is well defined is not going to provide us with the much needed medical care and attention we are in such desperate need of. When M.E. has the same funding and medical care as cancer, then we will have medical equality for all! How would the world respond if...
  7. Goodness to M.E.

    Australian Women's Weekly - article on ME/CFS

    Outdated information article, links CFS as the same as Myalgic Encephalomyelitis which is so wrong! Not worth reading or the funds to buy the magazine. Fatigue is a symptom of many illnesses, not an individual illness and not even close to the complex disease, Myalgic Encephalomyelitis.
  8. Goodness to M.E.

    Comment by 'Goodness to M.E.' in 'Myalgic Encephalomyelitis: a multi-system disorder'

    Brilliant! Am so glad this article is not linked to the bogus diagnosis of chronic fatigue as fatigue is a symptom, not an illness! Well done and thank you so much for posting!
  9. Goodness to M.E.

    Help me with my dissertation research

    Here's a good place to start with research/background reading: M.E. is not CFS and CFS in not M.E. and there is no such illness as CFS/ME.
  10. Goodness to M.E.

    Lesson learned: Separate ME from CFS

    Well worth the read, CFS and M.E. are not the same and until we stop indicating such, the confusion and disregard of the severity of M.E. amongst the medical and broader community will continue.
  11. Goodness to M.E.

    Comment by 'Goodness to M.E.' in 'In a long crash...is bed rest helping or making me worse??'

    In the event that you were seriously injured in a car accident, in a coma or hospital for many months, would you give yourself such a hard time about not being well and the need to rest to recover as it is a slow process? The more one rushes the process, the longer it takes, the more rest with...
  12. Goodness to M.E.

    ME/CFS and the Magic of the Canine Factor

    Thanks for sharing your opinion on my thoughts Jody. There is no such thing as right or wrong: only thinking makes it so! My experience of dealing with any chronic illness with others and from my own experience is that often we focus on the things that we cannot change or control instead of...
  13. Goodness to M.E.

    ME/CFS and the Magic of the Canine Factor

    Exactly! and it is a shame some here are not willing to try this as a self help option for independence improvement. M.E. is a multi-facet dis-ease and can only be tackled by one issue at a time, at least in my experience anyway.
  14. Goodness to M.E.

    ME/CFS and the Magic of the Canine Factor

    Thank you so much Jody for sharing such a great story of enlightenment and joy. After a long time being bedridden and running out of options to have my dog walked by others, the option to re-home him was unbearable as he had sat by my the side all this time and I never felt alone or isolated...
  15. Goodness to M.E.

    Has any Multivitamin Helped You?

    Some may find this report interesting: TEST RESULTS The scores and brand analysis of multi-vitamins, as mentioned in our story, are in Comparative Guide to Nutritional Supplements. A Compendium of over 100 Products available in Australia and New Zealand, written by Lyle MacWilliam BSc, MSc, FP...
  16. Goodness to M.E.

    Can we talk diet?

    Hi 'Give Me Strength', I put this in another thread you started but now think it best here. Am so sorry you are having a terrible time not only with this insidious dis-ease but also that you must hide it from the working world due to and ignorance and lack of empathy of how deliberating the...
  17. Goodness to M.E.

    Mild, Moderate or Severe M.E.?

    Each to their own, 2 doctors have advised me it is fine to use internally and my 92 year old mother has used it all her life as her mother did before her. A specialist recommended it as a component of a detox program also. I've had no problems with it and am happy with it's benefits.
  18. Goodness to M.E.

    Mild, Moderate or Severe M.E.?

    Probably because simple things to help us would come at a much higher cost than we could afford? Am glad you have found this site, lots of great ideas and support from other like-minded people who are all living in a world of M.E. that until a cause and cure is found, there is no money to make...
  19. Goodness to M.E.

    Mild, Moderate or Severe M.E.?

    Happy to help, if you have a vitamiser (I have a nutribullet for food options on bad days and great for linseed etc.) and use this to make the ES granules into powder form for the capsules but if you get the 00 size capsules the granules fit fine. All the best with this and I checked but iherb...
  20. Goodness to M.E.

    Mild, Moderate or Severe M.E.?

    As long as it says 100% Magnesium Sulphate (epsoms salts) without fragrance or other additives, you can drink it, as advised by doctor. No need to up-size the basic cost by 'food' advertising. Fauldings at Coles, Woolies or Foodland has been used for decades before 'health stores' existed.
  21. Goodness to M.E.

    Mild, Moderate or Severe M.E.?

    I use Epsom Salts from the supermarket and make them into capsules with a small capsule maker and large capsules. I think I got the machine and capsules from iherb? Once you make up the capsules, I take 4 every night before bed as it also helps one to relax and sleep. I find doing it this way...
  22. Goodness to M.E.

    Self recognition - one of those strange things

    I have spent most of my working life working in welfare/housing and in that time there is not much I haven't seen or had shared with me. The atrocities experienced by those in concentration camps, refugees from war torn countries spending years in camps after escaping from villages where family...
  23. Goodness to M.E.

    Queensland, Australia study in patients meeting alternative definitions for cfs -disability-M.E.

    I understand exactly what you mean, most of these type of things requires several days to plod through, complete and absorb. Same with reading books, takes me months to read a book because I need to keep reading the same page several times to follow the tread! It has taken me several years to...
  24. Goodness to M.E.

    Queensland, Australia study in patients meeting alternative definitions for cfs -disability-M.E.

    Study: http://www.hqlo.com/content/12/1/64 WHODAS 2.0 (Disability Assessment Schedule 2.0 - 36 item questionnaire - self assessment) http://www.who.int/classifications/icf/WHODAS2.0_36itemsSELF.pdf?ua=1 I found the above one of the most latest, helpful and current insights into this dis-ease...
  25. Goodness to M.E.

    Do lots of ME/CFS patients falsely believe they have ME/CFS or are they simply misdiagnosed?

    As a side note, after reading this book I no longer place much value to anything forthcoming from the psychiatric industry. Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America is a book by Robert Whitaker published in 2010 by...
  26. Goodness to M.E.

    Amitriptyline and fluoxetine (prozac) treatment

    Review: Book by Robert Whitaker; New York, Crown Publishers, 2010, 416 pp. Robert Whitaker, a former Boston Globe reporter, was curious about why there has been such a large increase of disabling mental illness in the United States. His book, Anatomy of an Epidemic: Magic Bullets, Psychiatric...
  27. Goodness to M.E.

    Thoughts About M.E.: Inquiring Minds Want to Know: Who is Behind the IOM FAQs?

    I'm really confused by it all, M.E. is not 'CFS-unexplained fatigue'. (hence the reason we are treated so shabbily by the Medical Profession because most think we're nuts) so why would anyone want to use a 20 year old CCC to replace a 30 year old tool to provide us better medical care NOW. Has...
  28. Goodness to M.E.

    Is there any literature to prove the validity of this disease

    There are some great books to read and like many it can take months to read just 1 but here they are: 'How to be sick' - Toni Bernhard 'You dont look sick' - Living well with invisible chronic illness - Joy H Selak, Steven S Overman, MD Care for someone with severe Myalgic Encephalomyelitis -...
  29. Goodness to M.E.

    Is there any literature to prove the validity of this disease

    The ICC primer and The Hummingbird Foundation by Jodie Bassett are the most informative on M.E. to my knowledge. Just for the record: in Australia, the WHO-IDC-10 M.E. is classified as G93.3 (disease of the nervous system) CFS is classified as F48.0 (Neurasthenia) THERE IS NO SUCH DISEASE OR...
  30. Goodness to M.E.

    MRI results-small vessel ischaemic changes long term

    I was originally diagnosed with CFS without any tests in 2009 however, in 2011, I was diagnosed with adrenal deficiency (Addison's disease) non treated hypothyroidism, Vitamin D deficiency, poor liver detoxification, leaky gut syndrome and hormone deficiencies which removed the original...