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I thought the same thing, I was almost moved by how good these guidelines are in a wide array of different scenarios related to the disease.. Specific advice for the severely ill..Children.. Hospital visits.. flare management.. To name a few. Just wonderful. Patients, parents and caretakers have...

I also thought the following passage on the theorethical grounding of CBT and GET was very solid "Patients recruited to studies are likely to be relatively well disposed to the trial therapies. Patients may have seen a CBT trial as a way to get NHS CBT that otherwise they would have had to...

The draft is very clear on GET and CBT not being curative treatments for ME, and that they never shud be pushed on the patient past their energy envelopes :)

The committee on why they wont support GET

This is an historic draft. Its really really good for ME-patients. Buzzing.

Interesting, I have actually heard a lot of them. Might be cultural differences

Well I studied at uni and worked, and the first years after disease onset was a nightmare cause many family and friends thought i was mentally unstable I know so many who goes through so much prejudice, so you cant generalize your own experience here

Ahh right, I remember you saying that at another time too now :thumbsup:

Whats wrong with the results? You dont think they can conclude as they did based on their findings? Asking cause I cant analyze them professionally I like the spectroscopy idea

My try on summarizing below.. Please point out if ive said something wrong, I only have basic knowledge of this stuff from ancient biology uni lectures In short: Muscle cells from the skeleton of ME patients are unable to use glucose as efficiently as muscle cells from the skeleton of healthy...

"Catastrophizing, defined as the general tendency to assumethatthe worst-case scenario will happen, presents challenges for the overly cautious ME/CFS sufferer. Pessimism, a fear of movement, and an intense irrational fear of expecting the worst to occur leads these individuals to isolate in an...

My bad I thought that came later haha

Insulin: "Before insulin was discovered in 1921, people with diabetes didn’t live for long; there wasn’t much doctors could do for them. The most effective treatment was to put patients with diabetes on very strict diets with minimal carbohydrate intake. This could buy patients a few extra...

Then e.g. Jonathan Edwards trying Rituximab for RA. If I recall correctly he did not know much of any specific disease mechanism, other than RA being an immunological condition. (EDIT: See Jonathans reply) My impression is that in most immunological diseases we dont know much of the specific...

Penicillin: There was suspicion it had antibacterial properties, and Alexander Fleming put this to the test by injecting it into some of his bacterial cultures. He published his experiment in 1929 and called the antibacterial substance (the fungal extract) as penicillin. Fleming did not...

Thanks for your experience from Finland JES, interesting to read its the same. One thing I forgot to mention when it comes to insurance, is that I dont think many of them opens up for treatment for ME anyway in Norway, I believe actually a lot of them specifically mentioned ME in the insurance...

Its a concern, yes. But so is living with this with no end in sight

It`s so frustrating being Norwegian without insurance, as its almost impossible to try anything at all here cause every GP or specialist that tries something gets investigated by the norwegian board of health supervision. Legally it is allowed with some extent of "experimental treatment", but in...

I got a couple of good miracle candidates for these dogs lol

Yea, but I saw someone say they got weight gain anyway, but then again, i see people with ME saying they have mysterious weight gain so i dont know