daisybell
Senior Member
- Messages
- 1,613
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- New Zealand
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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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@Ben Howell
Thanks Ben, for taking so much time and effort to keep us all informed of your experiences and the ongoing research that Ron is working so hard on.
Here's to you being able to take a walk across the Golden Gate Bridge next time you visit Davis-Dafoe land!
I was treated by Dr Kaufman at OMI a few yrs ago and consider myself to be almost normal now. However, I never suffered like Whitney or Ben and many others here. I was dx with anaplasmosis, babesia, bartonella, Epstein-Barr and a few other viruses.Yes. That is happening very soon.
So true!! This is NOT the way we are usually treated by doctors. Ridiculed, or dismissed or given a prescription for something we don't have because the doc wasn't listening to us at all.Perhaps you know this, dangermouse, but it is also a huge difference to how ME/CFS patients are typically treated in the U.S. ...it isn't just the UK. Ben Howell is obviously in good hands, but most of the rest of us in the U.S., not so much. If you're unlucky enough to find yourself in most any Emergency Room, you are as likely to be ridiculed as to be taken seriously.
When you are completely rested can you say what OMI found from all your tests or what was prescribed for you? I went through all the posts I could find for you and could not find it.
Unfortunately no. Whitney can't tolerate hardly anything. He can't even tolerate us, but no choice. We have to hook up his food, take out pee, (et al), and fix covers, etc. we tiptoe and don't touch him. No sound. Eyes covered. His schedule is now keeping me up till 8-9 am, so I sleep in day and then get to hang out with Ben and Claire. So nice. Who's next???
I had exactly the same thought @Ben Howell . The energy you put into facilitating communication, the promptness with which you reply to queries and the good humour and calm that you do it all with is impressive. That you can do that while being so ill, well, it's a great credit to you and also to Claire who obviously supports you so well.
Edited to add: For the avoidance of doubt, the linking of Ladybird books to Ben and Claire's adventures was not, I am sure, a commentary on Ben's writing style. It is mainly that Janet was a big player in the happenings in Ladybird books, although she was usually in the company of John, rather than Ron.
Its like a myth in our community that if a person can communicate they cant be too bad
Really? I hope you can too! I think a lot of us in the UK would like to raise money for you here but it's difficult to ask strangers to donate to a US charity. And those UK people who are taxpayers can give the same amount of money to a UK charity and have the govt add money onto it, so that's a strong pressure to donate to UK rather than overseas charities.
@Ben Howell does OMF getting charity status here mean OMF would have a physical research outpost in the UK, or would it be simply administrative so we can donate money more easily?Not to mention the UK based 'evidence base' that would arrive with OMF *if* this happened. Harder for NICE to ignore non Royal Colleges 'research' when they develop their new guideline.