Search results

I did 4 sessions about 4 years ago which was half of the full course. Up to the point where I found it problematic it was largely benign and unhelpful. But where it became problematic was when 2 able bodied women were telling 6 severe ME/CFS patients who were all bed bound to go out for a coffee...

I do really hate how by separating Long Covid as special away from all the other viruses that have caused ME/CFS over the years that we are going through this process of continued replication of findings and testing the same treatment options as if no prior work exists. We have thrown away 80+...

3 years last week.

I recall a few studies looking at exercise for backpain which showed no real effect in the short term but longer term had better outcomes (people who exercise regularly are healthier than those that dont!). I haven't yet seen anything that is actually effective for backpain really, surgery has a...

No ME patient will learn anything new, he does try to rebrand pacing and PEM. The more insidious thing he says unchallenged is that ME/CFS patients are de-conditioned, its the one concerning belief he has that I spotted as it went on. Nothing new in here just some acceptance of the symptoms.

I have a tens machine, I have used it for back pain with limited success. I have also tried spinal and vagus nerve stimulation, none of this does a thing for ME/CFS. You can overpower the pain for a bit with a tens but its only temporary relief but effectively numbing the nerves completely, that...

I dislike how living with Covid has become doing absolutely nothing different at all, rather than adapting to and allowing those vulnerable to it to still have access to life with some reasonable level of safety. Its become so politically charged to do the basics of looking after your neighbor...

Is notable that still no one is managing to reach the severe patients to assess their condition. They obviously can't be coming into clinics for care and nothing has been learnt from the exclusion of these patients in ME/CFS research either. They just aren't appearing in any of the research and...

Its only really something of value if you find yourself in hospital for ME symptoms and they aren't treating you within the guidelines. At which point you have prepared a withdrawal of consent from the current doctor causing you concern. I can see it having its uses, I avoid hospitals completely...

Water intake does very little for me. Electrolytes help a little bit but just water does nothing.

That sounds like a push, Biden has with his actions has shown he is really unhappy with the NIH and CDC in regards to Long Covid and the creation of a specialist department in the Whitehouse is the sort of move he should never have to do. I suspect the replacement will be very pro getting...

I am sure not treating people is cheap for the NHS, I am not so sure its cheap for society given about 1 in 6 people need drugs and medical care. This is literally just "this patient is too complex don't bother" rationing of care. They have been doing it for a long time already so its not new...

The harm is a permenant worsening of symptoms, after the crash from exercise I never recovered to that baseline again. Before treatment I mostly just had headaches and a bit of fatigue, afterwards I was housebound and had to spend 14 hours in bed a day and have never recovered (alongside an...

We are just one patient and we are swimming against their training, decades of experience and papers they have read and in this case the definition of the condition as something they can't even translate into anything useful. What the heck is a Functional Disorder anyway?! Sure sounds like...

Walking is good for the back but its using the muscles, standing on the other hand in the same spot in my experience is kind of uncomfortable. The next trendy desk idea will probably be a treadmill standing desk and that might actually bring some benefits.

There is this giant gap between those that can go to a GP and those that are carried into Emergency care with an ambulance. In the middle is probably 1 in 100 people who are unable to attend their GP or any outpatients on any appointment schedule. ME/CFS clinics do not do home visits nor phone...

I don't really see the point of the Long Covid clinics, or the ME/CFS ones. We have no good diagnostic, we have no treatment the money spent on all these clinics would be far better spent on research and on trials to take one of the existing bio markers to the point of being usable by GPs to...

I really don't want to see that. CPET's cause significant harm to the patient and could be making them permanently worse, inducing 2 crashes across 2 days is just pushing through and while its accurately diagnosed the disease and has been known about for decades its a terrible diagnosis because...

This is a 1 in 1000 doctor who actually pays attention and realises that obesity doesn't result in degradation of a patient in a few weeks. That is not normal the moment you become overweight its all doctors will talk about regardless of your symptoms and how they get worse quickly. This sort of...

Also after you have seen literally 100 different people who have all gaslit you its very hard to keep saying move on. Its completely systemic and widespread, its the normal and there is no possible way for most people to remotely go through this many doctors just to find the 1 in 100 that isn't...