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The freezer gel packs certainly last a good long while, I use them for my back pain. The issue I have is out of the freezer they are far too cold to be touching skin, you have to wrap them first with a tea towel once or twice. The bricks I have but have only really ever used for chilling...

At the very least the NHS 10 year plan will be much bigger news than the ME/CFS delivery plan and will completely bury it in the news cycle relegating it to a bullet point at best. If its really terrible (as expected based on the prior draft) then there will be no room in the press cycle to...

10 to 15 minutes for the better one I have from MyHalos. The cheaper one is less material and lasts less than 10 minutes.

If I could just find the energy I would like to make a migraine cap that is water cooled, then I could cool the water with fans to the air and get a nice chilled cap for as long as I want to run it. I saw someone do a similar thing converting a T shirt with water piping for computers and using a...

I use the phase change migraine hats and they don't unfortunately last very long. You would need a lot of this material to make something that lasted a long time. I equally struggle with the heat at the moment, it wipes me out completely. Unfortunately AC only really works when its a lot hotter...

I am really wary of CPET becoming a standard for testing patients for this very reason. PEM is not benign it can cause permanent worsening and that worsening can result in our death. CPET is not ethical even if it is an objective measure in a field desperately looking for one to use on trial...

The two findings I recall for "something in the blood" have not made any claim about mitochondria that I recall. One was about cellular function under stress changing electrical properties of the cells and the other was in passing the condition to Mice. I don't recall either making a link saying...

I feel like all these assisted suicide bills require some very particular previsions. They ought to support people trying whatever treatment plan they want and exhausting all the possibilities. If they get to the stage of assisted suicide and that hasn't happened then serious questions need to...

I certainly have problems with it disrupting sleep and I never did before ME/CFS. I don't know if it's just my sleep is disrupted anyway but I need to get any intake of caffeine done 12 hours before I would want to sleep which largely makes it something I do on waking. I have had periods where...

What else could this be? My experience this doesn't work, they don't care they have come to a conclusion without concerning what I have said and this isn't going to change it. Are there any tests we haven't done yet? This also doesn't work because there are no tests for psychosomatic...

We aren't in control of what doctors do. They are only interested once a treatment has hit the necessary evidence for it to be available on the NHS list of standard treatments and at that point they might be willing do a clinical diagnosis and rule out other conditions to try the ME/CFS...

I got really concerned when she had a series of Rehab people on to talk about how great exercise was for curing Long Covid.

None of us or these children are going to trust doctors ever again. That genie never goes back in the bottle. We will have been the victims of systemic abuse for years, decades, none of us is going to be seeking out the same therapists that harmed us and maligned our disease. Frankly I think its...

Sadly the most common way this is going down for children is so much worse than lacking treatment. Their doctors gaslight them and say its just anxiety or depression, their parents get told they have to force the child to play and go to school and the routine will do them good. The school will...

Relying on the subjective comments of 7 patients would be less than ideal, but relying on what their GPs said about the patients is totally worthless.

Its a complete lack of any form of feedback system at all. The complaints system and PALS etc is all there to protect them from lawsuits, it gives them information to work out how to attack your case and to try and stop you starting it. Its not something designed to actually listen to patients...

They always reach for DARVO (Deny, Attack, Reverse Victim & Offender), every single time. We have never seen any of them admit they got it wrong.

It really is time for government/Department of Health to go after all the funding of the parties who are publishing all this misinformation. I am sure the BMJ likely receives public money, that should cease given they commissioned this work. All the "researchers" who publish this garbage should...

I have only ever seen pleasant, so they hate me. I don't find them pleasant at all I find them rude, arrogant and ignorant of my disease and often incompetently dangerous.

its really self defeating because until that label is accepted and used you can't move on to attaching research, diagnostics and treatment improvements to it. Withholding the use of a label is the withholding of all medical progress and intervention.