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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. INDEPENDENCE OT

    ME/CFS Treatment Without Boundaries!!!

    I wrote this article in late 2011, while coming to terms with a recent diagnosis of Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS). Looking back, the article was an attempt to process the reasons why I had yet to receive any treatment or treatment advice from the National...
  2. INDEPENDENCE OT

    Comment by 'INDEPENDENCE OT' in 'Virus Infections cause chronic fatigue syndrom'

    Excellent summery. The immune system would be my first port of call for research. Stabilizing this system may go a long way to bringing the body back to a balance state. Well Done!!!
  3. INDEPENDENCE OT

    Comment by 'INDEPENDENCE OT' in 'All arrows point Inwards!!! Part Two'

    Thanks Xandoff, WOW 65 allergies as a child must have been really awful. Many of the kids these days are allergic to common food stuffs like milk and bread but no one picks up on it. Unfortunately parents are given laxatives instead of nutritional advice. Repeated exposure to allergens is likely...
  4. Symptoms Room 101

    Symptoms Room 101

    How many symptoms does a person who suffers from Myalgic Encephalomyelitis /Chronic Fatigue Syndrome have? Answer multiple by definition of diagnosis. Do they change in severity? Do they ever alleviate? Do old symptoms return and new symptoms arrive? I bet the answer to most, if not all of...
  5. All arrows point Inwards!!! Part Three

    All arrows point Inwards!!! Part Three

    Continued........... My family have direct experience of the symptoms and disability a diary allergy can produce. My wife is lactose intolerant. Even though she knew drinking milk and eating certain cheeses caused her to become bloated, she would often sneak a bit in here and there. It was not...
  6. All arrows point Inwards!!! Part Two

    All arrows point Inwards!!! Part Two

    Continued………… Malabsorption is a form of malnutrition caused by the small intestines incapacity to absorb vital nutrients from the food we eat. This process happens when the small intestine becomes ineffective due to the villi (cells lining the small intestine) becoming flattened. The villi...
  7. All arrows point Inwards!!!

    All arrows point Inwards!!!

    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) presents with an anthology of symptoms. Each symptom has a connective cause, which when investigated can be understood and treatment applied. Causes can include oxidative stress, mitochondria dysfunction, food intolerance, leaky gut...
  8. INDEPENDENCE OT

    Comment by 'INDEPENDENCE OT' in 'Accepting the Unexpected'

    Thanks
  9. INDEPENDENCE OT

    Comment by 'INDEPENDENCE OT' in 'Accepting the Unexpected'

    Thanks Gracie, your right ill health is very much a grieving process. I am sort of grateful I have had the chance to go through it. The present moment is always a refuge and the amount of related events when you begin to pay attention is remarkable!
  10. Accepting the Unexpected

    Accepting the Unexpected

    Many years ago I had an accident at work. I won’t detail what happened but I was unable to go back to my job as a tree surgeon in its full capacity. After a very difficult time I decided to return to education, finished a degree and completely changed the course of my life and career. I never...
  11. INDEPENDENCE OT

    The ME/CFS Diary, New Smart Phone App

    Has anyone tried the new Android Smart phone app for ME/CFS? I have been involved in the creation of this app since development started about 10 months ago. We are keen to receive feedback on the current version and for future versions. Please leave your comments and I can answer some questions...
  12. INDEPENDENCE OT

    Comment by 'INDEPENDENCE OT' in 'Pacing -The Baseline & PENE'

    Hi Taniaaust you sound well versed in PENE and activity management. Other flare ups are a pain when you manage your activity so well. I have found that it is either my immune system (ME immune system seems sometime non existent), gut problems or the curve ball that cause flare symptoms to occur...
  13. Pacing -The Baseline & PENE

    Pacing -The Baseline & PENE

    There is one area of ME/CFS treatment, which is agreed upon to be beneficial by all groups, working within the treatment of ME/CFS and living with ME/CFS, this is Pacing. Pacing Activity is the method of balancing all activity, meaningful and essential between sufficient periods of rest. This...
  14. INDEPENDENCE OT

    INDEPENDENCE OT

    I am an Occupational Therapist, based in the UK. I was struck with flu in 2009 and never recovered. Diagnosed with ME in 2011. The discrepancy regarding diagnosis and treatment led me to develop my own treatment path, as many of you have done. I was fortunate to meet an expert in IT and...
  15. ME/CFS Venting Frustration for Positive Outcomes

    ME/CFS Venting Frustration for Positive Outcomes

    The majority of health care professionals do a fantastic job and they are sensitive and caring people. I know I’m one of them! I have recently come across some online debates which shocked and saddened me. One of the debates is on the following link. Be warned however, you may find this...
  16. INDEPENDENCE OT

    Should Physical exertion and Mental exertion be separated for PEM?

    I prefer Post Exertional Nero Immune Exhaustion (PENE) to PEM not because it's a bit more catchy but because the name suggests the complexity of the reaction. I am physically affected more than mentally. Although during the early stages of the illness I found PENE affecting me both physically...