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:thumbup: ETA: But, maybe we would be risking an anti-matter protest! ;)

@Peter Trewhitt I like your book, and academic ideas. The way to get knowledge of this scandal out to a very large audience is via "entertainment" of a sort.

Yes, I've been saying for some time, well, over 3 decades that the brain should be researched much more. It seems logical that with so many neurological and cognitive symptoms the brain should be comprehensively studied. Regarding blood studies, those with far and away more scientific...

I'd also like to see research that somehow got to grips with whether pwME have an active, ongoing viral infection or not. Agreed, epidemiogical studies are required to fill in the blanks of what we already have. Both counting and causes are very lacking. ETA: doubtless in many countries we...

I too would like more brain imaging studies. Ones sufficiently robust enough to garner attention. We have smaller studies showing brain abnormalities. It would be good to see larger studies. As well, additional studies on the blood of pwME.

I've taken melatonin for years. It helps me get to sleep, but doesn't prevent early waking. It has never helped with any of my other symptoms of ME.

:thumbup:

So a coffee cup dropped has morphed into a chair being thrown? No dramatizing there then....

Some parents of children with ME place them in LP programs. The parents think the child is ill. This understanding may also have been validated by medical personnel. However, it seems the LP then goes about delegitimizing the parents' and others' authority and understanding that the child has...

Minimization often by use of psychologising, seems standard practise for some in medicine. Minimization without scientific proof, to the point of ridiculousness. For example, patients criticized for reacting to pain from a surgeon's knife when anesthetic was inadequate. Or the unreasonable...

It is a concerning question: how careful or exacting are some medical practitioners in their work? Are they demonstrating their carelessness when they turn around and denigrate patients for being accurate. Are these health care providers sloppy?

It stands to reason that if a disease is debilitating enough to cause isolation, e.g. being homebound, getting a chance to interact in a "multicomponent group-based treatment", may temporarily improve QOL. Perhaps being in such a study may validate the suffering, instead of the frequent...

Interesting, researchers are pursuing this. OK, maybe no correlation at all, but worsening GI symptoms have for decades with my ME, seemed to increase/worsen my brain fog. Don't know if anyone else with ME experiences this.

Yes, maybe your pulmonologist can test you. Here's hopeing. Maybe they'd be into doing a 2 day CPET out of interest. What others have said about the 2 day CPET is true. It can be very tough on pwME. Hope things work out, take care.

Hi @livinglighter and @josepdelafuente I found this link to the Massachusetts ME/CFS & FM Association re neuropsychological testing: https://www.massmecfs.org/resource-library/15-conference-reports/395-dr-gudrun-lange-reviewsneuropsychological-testing-for-cfs-and-fm ETA: It's indescribable...

It would logically follow that "health care practitioners" who believe in this mumbo-jumbo would also be more susceptible to signing up for human potential courses themselves. As in, you can think your way to whatever you want. "Thinner thighs in 30 thoughts." :laugh::rofl::laugh:

I thought the Scottish government was on board re the NICE guidelines. It appears lobbyists may have intervened. Oh yes, I forgot, it's only those "nasty militant pwME", rising up from their beds, and wheelchairs who are lobbyists. ;) :banghead:

From their website: " Neither can you have recovered from alternative therapies that are not compatible with scientific world view or model of the body." I don't think "changes in thinking", noted on the website as acceptable for "recovered" persons to recount, are "compatible with a...

Are practitioners doing MRI brain scans and like neurological and cognitive testing before they dismiss people with the label FND? I doubt it. It's the same for pwME. Despite recounting perhaps several neurological and cognitive symptoms and challenges, a sizeable number of pwME don't get...

Agreed. If medicine just keeps testing around ME, and never tests for abnormalities or dysfunctions that have been found by ME experts, this will further help delay knowledge about what is going wrong. Doc says: "You don't have this, and you don't have that, and you don't have something else...