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You make an important Point, what does ‘improvement’ mean? Also, what significance does it have research wise? What conclusions can we make? We still do not have an understanding of what ME is. We do not have a biomarker. We are not absolutely certain that the cohort is homogenous. From your...

Eeeek. That stinks. Unfortunately, quacks seems prolific in convincing desperate patients that they will get better, though their wallet will be lighter.

There is more serious adverse events involved with Cyclophosphamide, notably the neutropenia which makes patients vulnerable to all kinds of opportunistic infections, which can be deadly. It is not a casual drug and i know Jonathan that you know that, something that can be difficult to grasp for...

The website link from post 1 does not seem to work. Anybody has access to the correct link to the registry? thanks!

Correct, already on the market, but indicated for other diseases, most of it being cancer. You still have to test safety in the ME population, the ideal dosage, the regimen, the effectiveness, against a placebo, and insuring a representative patient population. Then you need to factor in that...

It take in average 17 years to put a drug on the market- this includes all trial phases, testing for efficacy and safety. These studies are necessary and should be done rigorously. It’s difficult (and expensive) in the best of example to put a drug on the market. Consider level of...

1) Agreed with extreme caution in not seeking this drug outside of clinical trial and without close supervision of a physician knowledgeable with this particular drug. 2) With all chemotherapies, there is a chance of contracting other cancers such as leukemia or lymphomas, not just bladder...

Interesting that such study has been done. My muscle biopsy performed within 3 years of onset showed slow-twitch fibre atrophy, which is type 1 and not type 2 as the quoted study found. Though muscle biopsy is invasive and not that pleasant, in my view we would gain knowledge by studying a...

fine with me :cool:

"Damn patients don't want to get better" (quote from Pace Trial worker) How horrible that all patients with symptoms that affect the quality of their lives are vilified and presumed to be malingering and exaggerating their symptoms.

How about playing music for all the folks getting cover? :rolleyes::rolleyes::rolleyes: Force em in rehab and impose group CBT to learn about unhelpful beliefs and definitely not listening to your body because the message you get from your brain are not always correct :banghead: and yes folks...

Increasing Prevalence of Antinuclear Antibodies in the United States. Dinse GE1, Parks CG2, Weinberg CR3, Co CA1, Wilkerson J1, Zeldin DC4, Chan EKL5, Miller FW6. Author information 1. Clinical and Public Health Sciences, Social & Scientific Systems, Durham, NC, U.S.A. 2. Epidemiology Branch...

It sounds a lot like a para-sympathetic, vaso-vagal type of response. You may want to examine the side effects of the medicines that you take, dose and schedule. The timing of the events also make me wonder whether you have any kind of gallbladder disease, as it reminds me the attacks usually...

Bhupesh tweeted this today with a follow up tweet that one of them was about ME/cfs.

How brave of Mattie to tell how it is for him, because i imagine there is pressure and investments in that surgery being effective and curative. And how devastating when the symptoms return, or realizing the symptoms never went away but were brushed off as something else.

Thank you for sharing @Tom Kindlon and yes @rvallee it is also my experience, my GP is doing the bare minimum, and it would be very difficult to find a doctor willing to accept a patient with a chronic disease, let alone a patient with ME. The biggest problem i have with GP’s managing ME...

Can i roll my eyes? :rolleyes: The irony.

Yup yup. Catastrophizing. She has also insulted women in labor.

Vincent Racaniello made an appearance on CNN in Erin Brunett’s show to discuss Coronavirus

Wearing a mask provides a false sense of security. People touch their face hundreds of times a day without even thinking about it. Touching your mask would provide the same opportunity for the virus to infiltrate and find its way to your mucous membranes. Moreover the humidity that your breath...