Search results

Good research takes time. It is so painfully slow for us patients to watch. We are just emerging from the pandemic, where a lot of the in-person patient research was halted for several months. Labs closed. It delayed research further.

The current state of ME research, along with the clinical care has been disappointing. I am not sure there is even one clinical trial in the works that is even worthy of mentioning. I understand that good science moves slowly and recruitment for 20,000 potential ME subject is hard and takes...

I guess that one could add a layer of sliced strawberries to go with the double cheeseburger with bacon and find the 20$ bank note between the lettuce and the pickle and clue in they have to declare less pain when the questionnaire ask them to But what about the non obese osteoarthritis...

They don’t interview patients with stage 4 cancer who claim they have been cured by divine intervention, do they? These patients must have left all their friends behind so they could live free of any negative views and maladaptive patterns. if you believe hard enough, and if you work at it hard...

And then the FND diagnosis and similar travesties.

Not a hyperbole at all. if you think about it, a majority of doctors are not aware of what is Me and how to diagnose it properly. Then there is a wide range of severity which means that those who can still work but struggle are most often missed by the medical system, and offered more general...

best to rely on @Simon M ’s report. sorry I had to say it.

Here in Canada the focus on anxiety and depression came before addressing physical symptoms, once organ damage was ruled out. So dyspnoea and shortness of breath without lung damage meant that you collected an anxiety diagnosis, maybe depression as well if you cried in the dr’s office. The...

Your first sentence describes objective measurement but either are non-specific to ME or have not been validated and accepted as of yet as being sensitive and specific to ME (in the case of cerebral perfusion). As for cytology of monocytes and NK cells, we have no definitive answers, either...

IVIg has been used for all kinds of ailments. I would suspect that in a clinical trial setting, unless you have very good reasons to try that, and unless you have objective trial endpoints (bio markers), that there are little chances that we’d go anywhere with it. It would also fail at...

I did not watch the webinar. But I know a thing or 2 about allogenic stem cell infusions from my past professional life. 1- the person receiving the infusion on day 1 will find out whether they receive cells from another human or only the saline infusion. That is because the chances of infusion...

good.

Agreed Not sure how much it will cost. Is this a money making venture?

HPA axis dysfunction affecting testosterone maybe?

When I was early in my diagnosis journey and search for treatments I came into contact with an internist who asked me whether I was abused as a child. These papers and in this case, the thesis that are defended in front of academics of ‘reputable’ universities, they still make their ways in...

Post moved from duplicate thread To associate dysmenorrhea and endometriosis at the same level as POTs is a new one for me. What about those without a uterus? (Men and women)

Ooops. Sorry. It’s as if the brain reads ME anyways.

A new title came up on my alert for this paper: A Mixed Methods System for the Assessment of Post Exertional Malaise in Encephalomyelitis/Chronic Fatigue Syndrome They seemed to have dropped the ‘myalgic’ all together. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10187342/ Here is a screenshot.

I’d like to know what dr Bateman has to say

@Dolphin It looks like the tweet has been deleted.