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This is what we are afraid of when the various ME/CFS communities go about promoting Long Covid and not being concerned about the funding gap, if something helps Long Haulers and not ME patients we will been dumped by our own advocacy groups for years. Its likely they are similar and progress in...

Up until last year the official guidance around the world in regards to ME/CFS and related fatigue diseases was exercise and CBT due to the wrong belief that the patient couldn't exercise and their condition was thus deconditioning. That is about 60+ years of public communication from media and...

The electrolyte drink sounds quite interesting, D-ribose often gets thrown in (does nothing for me) but 5g of L-Glutamine is quite a bit and this is twice a day, that will have an impact. Since the ME/CFS body appears to run on this protein for energy I can imagine that might very well help...

Its a toxic mix at the moment, zero real medical care where drugs do actually exist that can help, research off the rails focused in the wrong direction repeating results because we chose to name it differently combined with a toxic medical community denying peoples illness. Throw all that on...

There are too many reports of ME/CFS patients getting much worse with Covid (myself included in that) to really suggest to do anything but avoid infection. I remain mighty disappointed in the JVCI's passing of the buck on priority for vaccinations again this autumn onto GPs. There are plenty of...

The early tests on a couple of Long Haulers and on one ME/CFS patient showed full recoveries from the drug almost immediately. This has a lot of people excited that its a miracle drug. In practice the drug seems to constantly running into roadblocks for the stage 2 and 3 trials and has funding...

Its good the gap has been bridged but its not even 1 million in total for 7 months. At this point the funding situation with the NIH in regards to ME/CFS is beyond ridiculous.

I was the same, I went years without getting even a sniffle while I was mild and still wandering about. The only virus going that I caught in February 2020 is the one that really knocked me on my arse for 9 months, my immune system did not see Covid19 coming, that was my last cold and it was...

I am hopefully the process will continue and wont get axed and becomes really effective before any damage is done.

Even if it is just bad for us there is little we can do about it, most of us and probably running at 90% of what we can do in a day anyway, it's not like there is spare capacity to do more and we are being lazy. It's a consequence we can't avoid, it's not the cause of the condition.

In a sea of terrible papers and dreadful medical behaviour it's always nice to see the real researchers get together and swap real ideas. May you find something interesting and inciteful and solve your problems quicker over a beer!

This is Kings College, they are at the heart of rebellion against the NICE guidelines and trying to hide they are still using the BPS model by renaming their fatigue clinic to a physical alignments one, Dr Shepherd wrote to them just a couple of weeks ago (no response yet). Kings is dreadful for...

Based on what they say on the webpage I can't help but think the CQC assessment is spot on: CQC overall rating Requires improvement They are promising an awful lot they can't deliver, sure looks like BPS hiding in plain sight to me.

I watched that the other day, its not very helpful it really is mostly about Insomnia being mental illness, that people should be checked for Sleep apnea and central hypersomnia. It was actually pretty dismissive of the problem with Covid based insomnia and provided no light as to the cause and...

There are two primary ways to use machine learning, tagged or untagged data. With tagged data you would be taking positive results and negative ones determined manually and ensuring it correctly identified which is which through the training. I suspect this is using untagged data where the...

Yes he is. I have seen a bunch of people on the longhaulers sub talking about the results they got and the treatment, none has said it cured them so far. Patterson claims it distinguishes between LC and ME/CFS and other conditions but I haven't seen a paper to that effect yet. If he was curing...

I find it hard to get much actionable and really understood out of these very long tweet chains. What position has caused what harm? As far as I can see the bulk of the complaint here is they aren't communicating very clearly or well, they are using terms weirdly. What are their ideas? I am just...

Just to be clear the /r/medicine sub has flared users, many of the commenters were consultants and other substantial individuals which have been checked credential wise via the moderation team to have the role they say they have. They are not just random people playing as doctors nor junior...

No but she has no issue trying to blame chronic fatigue in Men on childhood trauma that doesn't exist so therefore must be repressed. There is sexism but men with Fibromyalgia and ME/CFS have the same problem whether they see a man or a women.

I also think its important that we recognise that the bulk of that money has gone into a biobank via the RECOVER programme. Its not funding treatments or even really experimental research its goal is to collect lots of existing tests from Long Haulers and track their symptoms. Some of the...