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In response to @SNT Gatchaman report that the term "medicalise" and "medicalisation" is only even been used to legitimise biological illness, from his experience and specialty point of view (and other discussion from other doctors). I think there is a difference in sub-cultures in medicine both...

Off topic again but I read in Stuff last month, a young woman diagnosed with hEDS flew to Germany for the nutcracker surgery with her mother after doing a Give A Little page, and it didn't work. King, who is now living at her parents’ home, is unable to eat or drink and has had no luck trying...

As a doctor, I don't consider any of those medications low risk! Many have significant side effects and can cause a variety of serious health problems. I looked up their website, it looks like a on-line physician site especially aimed at providing prescriptions for pwLC, ME/CFS, MCAS. Confined...

NZ uses two USA sourced machines (and the adhesive pads to deliver ECT). https://nzihe.org.nz/a-biomedical-look-at-ect/ The link is from a biomedical engineer who fixes ECT machines for Te Whatu Ora Health NZ

:laugh:

encapsulated an element of stress... oh really? now where would that be? I can see them all nodding their heads about their wonderful grasp of neuroscience - yes, see that trauma? it methylated that bit of your DNA and well, we don't really know how it works but we are quite sure something...

I found the Mirror article interesting. Another woman with Very Severe ME was admitted to the RD&E in 2023 and they refused to do NG feeds below 30 degrees. The only reason they changed it was a Change.org petition from the ME community/family and friends. Sort of makes their claim, (the...

It is a problem I often reflect on. I have been fortunate to find a person who totally believed me from the beginning. Actually if I hadn't found him, I would eventually have stopped looking, I would rather be on my own than with someone who gaslights me (having had this experience with past...

I will agree to disagree on that one Jonathan. There is difference between academic medicine and clinical medicine. But I do appreciate this is your culture not mine.

The other issue, after watching the ITV report yesterday, is that M was treated during Covid measures. No family could be with her. So that would have been an additional stressor for her not to have her mother there able to advocate for her as M did not have the physical capacity to do so at...

Yes, I do appreciate this but in all areas of medicine there is an opportunity to use "experimental" treatments which have an accepted rationale in the ME clinician community, based on the available science to date, especially people with very severe ME. When people are in dire need of help...

I wish they hadn't put CBT as a treatment for ME in the Guardian article. Rather focus on the disability of ME. Supportive CBT may only help people having problems adjusting to their illness and want help. Many adjust like anyone else with a chronic illness. This is why ME communities, like...

Interesting paper

I find that hard to believe, if that is what he said. He is a gastroenterologist, he would have seen lots of patients over his career getting TPN. It is common on surgical wards when people eg. people's with Chrohn's Disease (and many other gastrointestinal diseases), who are unable to absorb...

Interesting, the GP said one Consultant didn't think ME was a medical problem. Now we have the Matron of the hospital saying the same. So who is this Consultant? and what role did they play in her care? Has he or she given evidence? Why aren't they naming this consultant? I can see the...

Yes I agree. I haven't said that I think fludrocortisone is appropriate. I personally don't think it is. I don't think it is good idea to play around with hormones. And obviously I do not support GET.

I have had a good read through the comments. Yes, I totally take your points, @Jonathan Edwards about increasing the intravascular volume. Yes, we do need trials, trials are being done in Australia via OMF for an IV bolus. I see you do not discount that it may have a short term effect which may...

I don't think it is about the amount of red blood cells and oxygen carriage. But the plasma volume of blood. It is nearing my bed time so major apologies if this comes out wrong. I am sure the physicians in the group could pick holes in it:)....but I did a lot of reading on that before...

I still think there is some central reason (i.e. in the brain) for ME and PEM, and the often tantalising, research into the metabolome and mitochondrial function, which gives rise to my theory, that this intracellular problem is happening in every organ in the body, blood vessels, peripheral and...

I read this as it is her ("M's") fear of being locked in, not like locked in syndrome. When I am bed tethered and bed bound , I often feel locked in, literally to my body and brain, cognitive function is quite limited, it is very noticeable to my partner and people who know me well. I can only...