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  1. erin

    PEM for those who are, or were, mild sufferers, how would you describe it?

    My symptoms had changed so much within a year. I noticed this because of this thread. In the old days: Severe dizzy spells with nausea flu like symptoms sore throat unable to stay upright later on few years addition of those: dihaorrea bloaed more nausea back pain, indigestion recently non of...
  2. erin

    Films

    @Forbin "The Lives of Others" is a beautiful film. Love it. It's a classic. My favorite old film is "One flew over the cuckoo's nest". I'm also a huge fan of Kubrick, I love all his films. He is amazing. My other favorite director is N. Bilge Ceylan. All his films are great, though I highly...
  3. erin

    Sleep may trigger rhythmic power washing in the brain

    Dr Chaudry advised me to sleep not less than 10 hours.
  4. erin

    Scientific American: We Have No Reason to Believe 5G Is Safe, 2019, Moskowitz

    I use old vintage phone (20 years old) and not smart enough for smart phones. My husband do not own a mobile phone; he's seriously weird. He won't allow the household to use wireless internet. He's an electronic engineer; he worked and specialized in satellite and wireless connections for years...
  5. erin

    Cochrane review: Homeopathy for treatment of irritable bowel syndrome, 2019, Peckham et al

    I had many discussions in PR and maybe here too about homeopathy. I know you all disagree with homeopathy with the above arguments. Which is fair enough, makes sense, I don't really want to go all over again but I must emphasize that it helped me to relieve some symptoms. It would be unfair if...
  6. erin

    Closed Your experience of ME/CFS services - Take the survey by #MEAction UK

    "Did your healthcare professional give you an explanation of what ME/CFS is and what causes it?" She said they don't know what causes it, I appreciate this explanation but this is exactly the problem unfortunately.
  7. erin

    Medical Medium & the celery juice 'cure'

    This is terrible, a friend sent me a link similar to above and expecting me to be cured by drinking celery juice. I used to get excited about stuff like this in the early days of my diagnosis but I now know how deceptive and irresponsible these articles are. I get sad.
  8. erin

    Article : The Corruption of Evidence Based Medicine — Killing for Profit

    Sorry to hear you were affected by the big pharma directly. I used politics in general not only affecting ME. Opposed to the superficially very free times that we live, I believe we are not allowed to be political in this era, I felt there was more freedom in the past in my experience. We...
  9. erin

    Article : The Corruption of Evidence Based Medicine — Killing for Profit

    I kind of knew that you were not criticizing Dr Fung, I felt I had to write what I wrote because whenever I point out similar issues to family and friends, they always ask me what is the alternative or what to do? They expect me know all the answers because I know/ aware of the wrongness. And of...
  10. erin

    Article : The Corruption of Evidence Based Medicine — Killing for Profit

    @Snowdrop and @Barry, I understand both of your points. However, I feel one can only point out what is wrong and Dr Fung managed to do this while he is -I think- still working in the system that he criticizes. This is very brave of him and also must be very energy consuming, hard work. Pointing...
  11. erin

    Feeling of lacking air.?

    I can definitely relate to this. My GP in the UK sent me for lung tests also to a surgeon to fix my nose but both told me everything was normal. I am much better in a high oxygen areas, ie open air. I sleep my windows open at night in summers and feel much better and I hate and do much worse...
  12. erin

    Skin crawling/formication

    I have this too. I keep showering with warm water, helps for an hour and the sensation is back unfortunately. I take an antihistamine tablet before going to bed which also helps a little.
  13. erin

    brain tomography result

    Thank you to all answering this.
  14. erin

    brain tomography result

    atrophy and seconder enlargement of supratentorial ventricular system and sulkus means anything to anyone? I'm probably translating this wrong.
  15. erin

    BBC News website: 'Rabbits gave me a reason to live'

    I really hate rabbits, I know you all go what? They are not cute; smelly, they pee and poo all the time and don't interact much. Some of them have red scary eyes. I guess I will never recover because of this, shame...
  16. erin

    Metoprolol/Selo-Zok (beta blockers) - any experience?

    I've been using metoprolol 50mg by cardiologist since 2013 for palpitations wake me in the middle of the night. I was told palpitations caused by endocrine issues (Hashimoto's in my case) not through a heart problem. I wanted to get off them after stabilizing thyroid issues; eventually reduced...
  17. erin

    Supplements and activity designed to improve circulation - an experiment.

    Keep going Wonko. Good luck. On food related stuff, fermented food is very good for the heart and the gut. It's dead cheap to make kimchi, lovely as pancakes or stir fries. It is filling but not in a horrible way, very light in the gut. I use Dr. Ben Kim's recipe as it is sugar free and tastes...
  18. erin

    Waking up in the night and hearing a brain-generated sound

    I hear bagpipes prior to sleep. It is in the back ground and seriously annoying racy tune. I fall into sleep with it and I suddenly wake up with a huge popping sound, like a wine cork popping then I get awake. Anxiety is there too but not so bad, don't know what this symptom is called.
  19. erin

    A 4-day mindfulness-based cognitive behavioural intervention program for CFS/ME. An open study, with one-year follow-up, 2018, Stubhaug et al

    Ah hah! I bought into this in my early days and went ahead, had a 2 days silent mindfulnes workshop. I left the place slightly peaceful and content, remembering coming back home when I turn the corner to our street I saw my sister in law's car. I thought fuck! 2 days of peace and silence gonna...
  20. erin

    Is there a link between allergies and ME/CFS?

    I am the youngest in my family and I have never had allergies until 20 years old, I become allergic to mussels. Then no allergies for many years, I was diagnosed 2008 and 10 years later I am now allergic to many food things; gluten, dairy any fruit, taken to A&E several times for swelling of...
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