• Welcome to Phoenix Rising!

    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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Search results

  1. wingate

    Star Tribune Long COVID & NIH Oversight Reporting

    Nice work, @Dakota15 . Thanks for sharing
  2. wingate

    Terrible and expensive experience with Dr. Kenny De Meirleir

    This is terrible! I'm sorry the clinic wasted your precious time and energy. Can you dispute the charges with your credit card company? It doesn't seem right that they could bill you for $3200 but then charge you over $4000.
  3. wingate

    Do you go on Holiday?

    I loved to travel before getting ME/CFS. I still try to travel, but it looks a lot different now. Using a wheelchair at the airport helps me save energy - lots of times there is so much walking at the airport! I also got one at various museums (they had some available) - my travel partner...
  4. wingate

    Career path to make a change (social or political)

    If you would like to become more involved in ME/CFS, you might explore the various ME organizations to see what they offer and whether there are ways to get involved. You may already know of MEAction, which has both a national group as well as some state chapters. For example - I think there...
  5. wingate

    Career path to make a change (social or political)

    Public health could be an option for you based on your interest to help people using social science/humanities skills. There are many disciplines within public health that a person can focus on - health policy, advocacy, management, behavior, education, epidemiology, environmental health...
  6. wingate

    What Questions to ask Rheumatologist?

    I would want to know what other illnesses within the realm of Rheumatology could possibly causing the symptoms. For example, could they order tests to rule out autoimmune disorders. And if there's an autoimmune component to your illness, what options are available to pursue?
  7. wingate

    for those who got worse with mestinon

    Interesting info, @Rebeccare. Thank you for sharing your experience.
  8. wingate

    Getting Kaiser Permanente to conduct a 2 day CPET- My Experience.

    Wouldn't that be nice! If only Dr. Olson could persuade some of his former colleagues.
  9. wingate

    for those who got worse with mestinon

    Hopefully I'm not derailing the thread too much, but @Rebeccare are you saying you have had multiple CPETs? Have you found the tests to be helpful for managing your thresholds for activity and finding your energy envelope? My doctor offered me the option of taking a CPET, but I opted not to for...
  10. wingate

    Scared to get covid vaccine

    @Emmarose47 - I felt nervous about getting the vaccine, too. I was most worried about triggering a worsening of my symptoms, which obviously none of us want! I suppose that is what worries you, too? I decided to get the vaccine because I thought getting the actual virus would be riskier than...
  11. wingate

    Any more vaccination personal stories?

    I got the Moderna vaccine. After the first dose my arm was a bit sore, and that was my only negative side effect. On the plus side, my knee joints, which normally feel a bit tender, felt better than usual for a few days after the shot. After the second dose, I had some mild side effects...
  12. wingate

    Article by Whitney Dafoe dedicated to severe and very severe ME/CFS

    This account vividly describes a living hell. The sheer strength and courage demonstrated by anyone living with severe ME cannot be understated. It is on a whole different level. The indifference and lack of understanding our community continues to endure amid the horror and suffering of the...
  13. wingate

    Salt tabs: Favorite brands? Dosage?

    I used the nutrition facts from a brand name mix as my guide for a cheaper homemade version. I mix 16g table sugar, 2.5g table salt, and 1.5 g salt substitute (potassium chloride) with 32 oz of water. Like others say, the taste is somewhat acquired, so I tend to mix in flavored seltzer water...
  14. wingate

    Is a formal campaign against Long Covid underway?

    @Diwi9, if you feel up to it, maybe you could write a response or letter to the editor rebutting some of the inaccuracies in the articles? I couldn't read the wsj article because it was behind a paywall, but I did read the article in Stat, which had a lot problems, many of which @nerd...
  15. wingate

    Reality of my ME/CFS

    So happy for you, @kristysmiles! Must feel so good to be symptom free now, and also have the accomplishment of medical school under your belt! Based on how demanding it is, I imagine it was pretty hard to get through medical school while dealing with the physical and mental stresses. How did...
  16. wingate

    anaerobic exercise

    I wonder if the Workwell Foundation has research on this, since they have done research on aerobic/anaerobic systems in ME/CFS? By 'modest', are you thinking like chores/daily activities around the house that require strength/lifting etc.? Or something more intensive, like a program of...
  17. wingate

    Cognitive Issues

    Out of curiosity, have you already tried anything for your cognitive issues? Or have you identified any patterns to these symptoms? For me, the cognitive issues seem to stem partly from orthostatic intolerance or overdoing it physically. Here are some lifestyle modifications that have helped...
  18. wingate

    Dysautonomia Conference

    I would second that, @wabi-sabi. Hopeful to see ongoing research based on physiology and not psychology. I guess one positive of COVID with respect to the conference is that it's free and online - so accessible! The moderation is also excellent- they leave plenty of time for questions, and as...
  19. wingate

    I have had CFS for 6 years and my wife just developed it too

    I'm really sorry to hear this. It must be tough, especially since it sounds like you have recently moved in together? I echo the others in saying that it seems like a terrible coincidence that you have both become ill. I think I recall Ron Davis mentioning in one presentation or other that he...
  20. wingate

    Looking for a CFS doctor in Eugene Oregon

    I think Dr. Kaufman is practicing (at least part time) in Seattle now. Here's a link to his page with a clinic there: https://www.centerforhealingneurology.com/david-l-kaufman-md/ Might be worth looking into, especially given more options for telemedicine these days...
  21. wingate

    Just finished an "intelligent" program of cardiac rehab and doubled my exercise capacity

    Great news, @Sushi. It must feel good to have some small gains in your fitness and be able to do a bit more! I'm glad to hear that the staff at your program were so conservative and didn't make you push yourself too hard. Were they already aware of ME/CFS and PEM? Or were you the one to...
  22. wingate

    Join OMF at Harvard to meet our science team

    Wow @Ben H ! Great news! Is there an agenda posted anywhere? I know there is a great team at Harvard. Would love to see who will be speaking.
  23. wingate

    Have you seen a Palliative Care clinician?

    Have any of you seen a clinician specializing in palliative medicine? If so, how did it go? My healthcare insurance offers palliative care, and I wonder if it would provide any benefit. (In contrast to hospice, a patient does not need to have a terminal illness to be eligible for this sort of...
  24. wingate

    ME/CFS Expert Clinician Meeting This Week

    I'm pleased to see this summit is happening for a second time. Does anyone know if there will be a follow-up after this conference like last year? @Rinareens[/USER] and @Butydoc posted a lot of nice information and photos here last time, which was great to see...
  25. wingate

    Mold

    Agree with @Wishful. I think that if it's reasonable for you to get back to that other room and you feel better there, it doesn't really matter if it's mold or not because at least you'll get some relief. And, if you feel worse in other areas (like the porch), you might as well avoid them if...
  26. wingate

    2019/

    https://my.meaction.net/calendars/millionsmissing You can look at the events as they are posted at the link above. It looks like only a few are listed so far, but I would imagine that many more are in the works all over. I read somewhere on twitter that this year the actions are going to...
  27. wingate

    Compression Stockings for Low Blood Pressure

    I have seen reports from others around the internet that compression stockings have helped their POTS. I'm glad they worked for you. How long do you wear them each day? Do you notice a big difference when you take them off? From where did you purchase them? For awhile I tried with no luck...
  28. wingate

    Thinking that i should do something to give back and help our cause want to join me?

    @humanrising Have you made any cards yet? You should post some pictures of your creations here before sending them off!
  29. wingate

    Thinking that i should do something to give back and help our cause want to join me?

    Great idea! I for one love sending and receiving snail mail and cards. I'm sure the researchers will be touched.
  30. wingate

    #OMFScienceWednesday: Michael Sikora, PhD

    I was really happy to see Michael on the speaker list at the OMF Symposium. His research along with Mark Davis on T-cell expansion in ME/CFS is really fascinating. Even more, it's a great sign to see such a young face on the team at the beginning of his research career. I hope he's able to...