Hypothalamus dysfunction/damage:
I hope we hear of some data regarding pituitary antibodies at this conference. Dr Bansal briefly mentioned a group was looking at this in a talk a while ago, but no news since. To find a key neuro inflammatory, neuro immunological reason behind inability to cope with stress, would be a big finding in my opinion.
If your brain can't signal to your adrenal glands to increase cortisol you would become unable to cope with stress, even if your Short Synacthen test was normal showing an adequate cortisol reserve. (One hallmark of ME is an inability to cope with 'stress', physically). There has to be a reason why regarding utilization of cortisol, we become overwhelmed.
One way of showing this brain damage (such as from a virus), is if patients can have low GH/ low cortisol using a Glucagon stimulation test (GST), who 'pass' the Short synacthen test to rule out Addison's disease (Potentially fatal adrenal failure). Naturally, having this test is next to impossible, due to the NICE guidelines in the UK recommending apparent fraud based research (GE + CBT) to reduce the symptoms of ME. So very few ME patients would even have heard of a Glucagon stimulation test (who have adrenal problems), never mind actually had access to one. (Years ago there was talk of adrenal gland size reduction in some CFS patients. Perhaps researchers could follow that up for us, regarding patients who have low normal cortisol, over many years, to see if they too had atrophy of their adrenal glands, OR, they were small to begin with).
Muscles and ME.:
I wonder if muscles are now a dirty word in UK CFS research? I miss the muscle research a lot. Will we hear of any this year or in the future? Other than the pain from high levels of oxidative stress, if your muscles were full of acid, they probably would be painful. Dr Newton's UK research (out of the body admittedly) was showing this finding in a petri dish using muscle biopsy samples. I wonder what will happen to this line of work (abnormal muscle cell pathology in CFS), if the IOM manages to destroy ME forever, also in the UK? I guess it makes it harder for work to be funded, Vs if muscle pain had been a diagnostic criteria for SEID.
I see there was a 1 million grant given to the psych lobby again a while back (after the PACE trial) for exercise therapy in children without ME. Just think what biomedical researchers could do with large grants, targeted as specific areas of ME pathology in large scale studies, using the correct cohort (people with muscle pain, muscle weakness).
Unfortunately SEID and Fukuda CFS prevents any meaningful data due to the heterogeneous cohort problem. I hope that Invest in ME keeps it's name, and doesn't alter it's name to Invest in SEID. It's quite shocking a UK charity is at the forefront of sharing medical knowledge, whilst the Gov't continue to sit on their hands, massaging psychiatrists ego, and funding them handsomely for apparent scientific insanity in which a claim is made of a recovery using a treatment, but recovery means to relapse and the data from studies isn't allowed to be given to the public, despite them funding it!
Maybe one day, Invest in ME will be able to announce that because of a pathogen finding (likely from America or Europe), that the Govt will now invest in ME, rather than a charity having to. That would be a great day for science and the medical profession waking up from a self induced sleep.
It's actually very sad that 10yrs has past for Invest in ME, and precisely nothing has changed on the ground. CFS/ME centres in the UK are useless, because no treatment has been validated to work. (Imagine an MS specialist nurse, with no drugs). There are no ME specialists nurses obviously. Maybe in 2030.
The UK treatment remains CBT/GE and convincing yourself you don't have an underlying organic disease. A tilt test is no permitted (to prove ME associated autonomic dysfunction).
I'm praying that a ground breaking finding, one day at an Invest in ME conference, but faith, so far, has gotten us nowhere. What we need is funding, funding that won't be given if the condition cannot be proven to exist in the first place (Fukuda and SEID diagnostic criteria).
It was 1969 for 'ME' being officially recognised, 46 years ago, which means a neglected 30 yr old ME patient (if still alive) is now aged 76 and never had a life since they became sick in their prime adult years. Now remember the poor children also.
At least Invest in ME can say they played no part in that and tried their best, and I congratulate them for all their efforts in trying to save lives, rather than prolong misery (current Govt approved response). It's great charities exist, and it's vital than when possible we donate to charities who do actually fund quality biomedical research.