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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. G

    Hope I’m not late to the party - long Covid proves to be physical (article)

    N=25, not impressive at all. This study will not change anything for this moment. More replication studies are needed. Also it doesn't explain all symptoms and it is not the cause.
  2. G

    Will we ever get an apology ?

    "'I am desperately waiting for the NIH study to be published - almost eight years later. How in any universe can that be acceptable ? Who is accountable ? No-one ?"" They didn't find anything important. Don't put your money on this study. I am sure we will be disappointed once again.
  3. G

    Something exciting is coming in November

    I think it could be the study from Avindra Nath (NIH)? Lets hope it is real news this time. I have heard it many times before. I hope we will not be dissapointed.
  4. G

    Help me Interpret this please

    I think you need see an internist infectiologist and get rid of these infections. I see your lymphocytes are low and leukos little high. Your immunesystem is weak and figting. Very strange that the antibiotics didn't help. Especially against trachomatis and lamblia. You need to get rid of them...
  5. G

    Comment by 'Gijs' in 'God, please.'

    Doctors don't know what to do with our disease. Even if it were psychological, you still wouldn't treat people like that. It is ignorance, arrogance, lack of empathy and narcissism. This man clearly suffers from the god complex. That means he is convinced he knows everything. Most patients have...
  6. G

    An Open Response to the British Psychological Society Regarding the DHSC's Plan for ME by Dr Jo Greer and Jennifer Wilson

    Thank you for writing this letter. A clear and realistic statement. In 2023 this is still necessary. After decades, the medical community continues to cling to outdated ideas. It is not only disgraceful but criminal behavior. Many lives have been destroyed by this disease. And the doctors who...
  7. G

    New Book about Thirst in ME/CFS

    Drinking 8 till 20 liters water a day can be deadly. It is very dangerous. It also lower you natrium levels and can causes a heart rhythm disorder. Drinking al lot can also be caused by diabetes isipidus.
  8. G

    A life cut short by medical neglect: interview with Sarah Boothby, whose daughter Maeve died at 27 of severe ME/CFS

    I want to wish her family, friends and loved ones lots of love.
  9. G

    [Epilepsy] drug shown to alleviate Autism-associated behavior in mouse models

    I know many ME/CFS patiënts have an abnormal EEG. So, i think a double blind trial is warranted.
  10. G

    What now little man

    I've been sick almost as long as you. I don't expect a cure for our disease. If I speculate. I think Nath somehow found a way to diagnose neuroinflammation. The fact that this study has not yet been published may also be because he wants to be very sure. He has a reputation. That's why I think...
  11. G

    New personal finding: PEM threshold related to activity level

    @hapl808 , i have been there too. What an awful disease we have. Take care !
  12. G

    Supplements causing high blood pressure

    Watch out with the long use of Domperidone. It can give you heartproblems. Ask your doctor. Why you use this? It is against nausea and vomiting.
  13. G

    Comment by 'Gijs' in 'RANDOM THOUGHTS ….‘Life After Death’ (Kubler-Ross), The Controversy About ‘The Tunnel And The Light’ Reconsidered …. Light Wins'

    For those who are interested here is a study from van Lommel e.a. 2001 The lancet. Lommel, Pim van, Ruud van Wees, Vincent Meyers, and Ingrid Elfferich. “Near-Death Experience in Survivors of Cardiac Arrest: A Prospective Study in the Netherlands.” The Lancet 358, no. 9298 (December 15, 2001)...
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    Comment by 'Gijs' in 'RANDOM THOUGHTS ….‘Life After Death’ (Kubler-Ross), The Controversy About ‘The Tunnel And The Light’ Reconsidered …. Light Wins'

    You can't say that there is life after death, but you can't say that there isn't either. All we know is that a uniquely clear consciousness is perceived (by 10 to 20 percent of these people) the moment someone goes into cardiac arrest. It is completely illogical that someone who has no or a...
  15. G

    Full remission after 7 years of ME/CFS - What worked for me

    Thanks for sharing your story. Much is unfortunately familiar to me. I'm so glad you found something that makes you better. You are so young and you have your whole life ahead of you. Enjoy it!
  16. G

    Paradox: pacing is making me worse, not pacing gives me PEM...

    I think by staying active you live on adrenaline. When the adrenalin energy is depleted, you collapse. It's some kind of fake energy. By being active you suppress your immune system and when you stop you activate your immune system again with all the associated complaints.
  17. G

    Abilify during crash? Save crash?

    COVID is a nasty virus. Did you get vaccinated? I hope you feel better soon. Hang on!
  18. G

    Poll: When do you brutally honestly think there will be a cure for ME?

    I think that this disease never ever will be cured and the cause will be unknown for more then 100 years.
  19. G

    My plan for surviving covid, plus vaccine dillemmas

    I totally agree! I would prefer no suffering any more.....
  20. G

    My plan for surviving covid, plus vaccine dillemmas

    Good points. It's a tough decision for us. Vaccination or no vaccination. Another point is: excess mortality. No one knows yet how it comes. Not because of corona, experts say. What causes this? There seems to be a statistical connection with vaccination. But this has not been proven. So if it's...
  21. G

    My plan for surviving covid, plus vaccine dillemmas

    Few people are vaccinated in Africa. Omicron is not a big problem there. Few people are vaccinated in India. Omicron is not a big problem there. And so there are a few countries with low vaccination coverage where Omicron does not seem to be a problem. It is quite contradictory to say that...
  22. G

    My plan for surviving covid, plus vaccine dillemmas

    https://www.reuters.com/business/healthcare-pharmaceuticals/who-sees-more-evidence-that-omicron-affects-upper-respiratory-tract-2022-01-04/
  23. G

    Medication for severe

    Maybe you can try a low dose of oxazepam or lorazepam. I wish you the best it is very hard to deal with this kind of anxiety. Take care!
  24. G

    Terrible fear and panic. What helps? I can not anymore

    Hi Lissie, I read your post on this fourm about panic and fear. It is terrible i know it. I have the same thing in periods. But it is now much better. The only thing helps for me is 1mg lorazepam a day. But it will be better in time. I think panic and fear is one of the most underestimated...
  25. G

    So confused again.

    Hi Fuzzyhead, isn't it a strange disease. It can be that you have CFS and Rheumatoid arthritis. It is well known that some CFS patiënts feel relieve after the use of steroids. Mostely temporarely. The lesions in your brain is also found in CFS patiënts. I hope you feel better soon. It is awafull...
  26. G

    Had my first COVID vaccine January 18th

    Hi Starlily88, good for you! Can you get us informed if you get symptoms this week or later and especially after your second dose? thx
  27. G

    Individual qEEG Research Assessments Released from Laurentian University

    I believe this could lead to an objective marker for ME. Just like epilepsy. I wait for the scientific publication.
  28. G

    Chronic fatigue syndrome a possible long-term effect of Covid-19, experts say—CNN, Ryan Prior

    Good points DIWI9. I think we can take CFS as a start and make subgroups like CFS1 starts with EBV, CFS2 starts with stress, CFS3 starts with Qfever, CFS4 starts with Lyme, CFS5 starts with covid-19 etc... And look within those groups if they also have POTS en IBS.
  29. G

    Does general anaesthetic worsen CFS/ME?

    I have had a general anesthesia in hospital for examination. I didn't have more or worsen ME symptoms. I must say i even felt a little bit better after i woke up :-) But i think the surgery (i don't know what type you have) can make you feel worse. But you will get on your ME level like now. So...