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Wow. If it is true that 90% of controls also carry this mutation, it strikes me as irresponsible to throw out the hope that an IDO2 mutation will somehow serve as a marker for ME/CFS. Very disappointing. Bill

What does it mean that "every" patient has a mutation for IDO2? How many people? Tested where? How common is the mutation in people w/o ME/CFS? What would be involved in getting tested oneself? It would mean a great deal to me to at least find a marker before I shuffle off the planet. It...

Just know how much I appreciate the effort it took. I get it. And I honor what you were able to accomplish. I'm stunned that we are still fighting such battles, but that's where we are. Well done Jeff! Bill

Thank you for all your hard work Jeff!!! ( @Webdog ) As a Kaiser SoCal patient, I may directly benefit. At the moment I'm not aware of a single doctor in our large system that treats ME/CFS or has much knowledge about it. Well done. Thanks to you, @dave30th, as well. Best, Bill

In my case, I stopped donating blood immediately upon getting sick. In 1984 no one understood what this mystery illness was (not that things have improved much :arghh:) here in the USA, but I wasn't taking any chances that I might have a blood-born contagious disease. I can't believe we still...

In the short window between the AIDS crisis breaking and getting sick myself in 1984 I was regularly donating blood due to the great need that flowed from AIDS and the AIDS-related hysteria reducing donations. That ended when I came down with CFS. The greatest fear I've had over all these years...

Andy, without having read follow-up posts, I think you are off to a generally excellent start. I do think that PEM should be defined when it is first mentioned (to help a general audience). The one statement that was a clunker for me was: This suggests that the mechanism in the body that, in...

I do wish there were chyrons with the names of the MPs, their districts, and their parties as the debate goes along. As it is, the diversity in accents suggests a very wide geographical support from N. Ireland, to Wales, Scotland and England. And I've made educated guesses when it comes to the...

Repeating the link to today's debate for those living in time zones that make live viewing difficult or those who have missed it. It is available to watch here: https://parliamentlive.tv/Event/Index/3d63c39d-18f3-4cd7-8509-c91785dced98 Bill

I guess what I'm trying to say is that I know from experience that it is sometimes possible for a person with ME/CFS to work (if it is the right sort of work) at 100% in such scales and still be suffering from this dreadful illness. Ask me how I know. This truth doesn't take anything away from...

No Kelly, I wasn't 99% or 95%. LOL. More like 65%. Yet for 8 years, on one job, a 60 hour week was my minimum work week. I actually worked did 12 days on and two days off for those 8 years. Often a hundred plus hour weeks with firm deadlines for delivery. While I was somewhat atypical, I'm...

Even the 100% is problematic IMO, with much riding on the phrase "without significant issue." I've lived with ME/CFS for 34 years. During that time I've experienced severe, moderate, and so-called "mild" forms of the illness. All have been hell. There have also been extended periods during...

@JenB, wishing you the best in your recovery. Bill

In the "separated by a common language department," I would note that in American English "tabling" chiefly refers to delaying or postponing an action or taking something off the table. Where in British English the meaning is almost exactly the opposite. To avoid confusion, the Westminster...

I must say, I'm really amazed by Nicky Morgan. After writing her initially in thanks for her support (as an American with ME/CFS) and getting a very warm reply, I wrote her again yesterday in praise of her appearance at the Backbench Business Committee meeting and reiterating my appreciation...

Very fine work. Thanks to all involved! Two comments: 1) As advocacy work, I think the statement could be improved by having a stronger position statement at the outset (in addition to the supporting quote by Jonathan Edwards), prior to the "Background" section so that the agreement is framed...

Thank you for the link! I just watched the meeting on Parliament Live from here in Los Angeles. I sure appreciated the support of Carol Monaghan, Nicky Morgan, and Stephen Pound. Does anyone know the names of the two gentlemen seated screen-left and screen-right of Carol Monaghan and the...

Great news! Congratulations @JaimeS. Bill

@Hutan I'm embarrassed to realize that I was unaware you have two children with ME/CFS. I hope your children continue to improve. I wish I had words that would offer comfort. Nothing would be harder for me than having a child suffer with this thing. I'm deeply sorry to learn this news...

Like many of the boys we know, my son (age 13) has had the Gardasil 9 series of shots. He has had no ill effects (and does not have ME/CFS). We're glad to know this vaccine has reduced the risks that he might contract or spread HPV and that any future partners would not face a risk of cervical...