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I wish I had my spinal fluid tested. I am all about providing data including cerebrospinal fluid sample, but my health care system stubbornly does not want to gain any information or knowledge about my disease, they simply want us to attend CBT classes and learn more about pacing and eating...

@Arnie Pye I think the main question is are you anemic, yes or no? If your hemoglobin is normal, then there is nothing to worry about. Eat well, and if you have heavy periods or if you are vegetarian you may benefit from iron tablets as you would need to eat a lot of meat to catch up. As of...

Please, show me where they say that directly on their website (not on someone’s blog)

Correct. The actometer counted steps while i was on my mobility scooter, from the bumps on the sidewalks.

From what i remember they felt that patients with ME had high cortisol. It is not my case, and i know of others who have the same presentation. So if their hypothesis is wrong from the begining, how can we assume that this will be a safe drug for patients?

Not sure what DBPc stands for. But a good trial would have enough patients that would be subgrouped (ex: gut issues, MCAs issues, muscles issues, severity level) and compared. In the best of worlds, brain imaging before and after could be compared. Did I mention we need biomarkers?

Indeed we are in desperate need for clinical trials to find out effectiveness, adverse events and how it stands up against a placebo in our patient population.

Agreed. I think the reduction in social services, in the UK is alarming. Folks are having a very tough time accessing disability payments, can no longer access healthy food. Only the sickest get health care, and it means patients are neglected. Hospital staff is overworked. There might be an...

Good point @Alvin and i must add that rheumatology in Canada seemingly does not want to care for fibromyalgia and from personal experience, ME is also outside their scope of practice. This said, i hope Zaher can be a catalyst to change and inclusion of these diseases for the greater good.

Exerpt: More at the link https://www.hippocraticpost.com/integrative/integrative-approach-me/ There is an opportunity for comments.

Lipkin said there is a paper in the work, that he couldn’t discuss its content otherwise he wouldn’t be able to publish it.

Reminder that this telebriefing is today! Check out your time zone.

Too bad it’s only for right handed people :(

Welcome @Gary Burgess and thank you for sharing your story on BBC radio. You are helping thousands in feeling less lonely and less stigmatized.

This one is a shocker. What a huge loss. i wonder whether he will remain in the field or not. https://solvecfs.org/dr-zaher-nahle-leaves-smci/

Hi @Pen2 my extended health insurance covered my scooter at 100% (I am in Canada)- so I could pick the one that suited me best. i am allowed a new one every 5 years. It allows me outside without spending much energy, so I am thankful.

They keep on changing the terminology to make it acceptable for patients. Hysterical became psychosomatic, then became ‘all in your head’ then became ‘it’s real but you need CBT’ Then CBT became self-management or ‘the good kind of CBT’. It is convenient to keep on this slippery slope of...

Without going too far off-topic, I am sorry @ukxmrv that you had to go through a very difficult chemo protocol. FEC is on of the tough one, and the most difficult drug is epirubicin (the E of FEC) but the 3 drugs combined means that the side effects amplify. The ‘ risk of infection’ is because...

If there is a transcript i would love to have a copy. I am unable to watch due to cognitive issues.

I was a chemo nurse administering clinical trials. In blinded trials, patients would receive pre-meds as per protocol because remember, even the staff would not be aware what they are administering, but assuming for safety reason that the patient recieved the real medication). And yes placebos...