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Text of the post: "Dr Luis Nacul, internationally respected ME clinician and researcher, to provide specialist care in Suffolk Suffolk Commissioning have released a statement today confirming that Dr Luis Nacul will be providing specialist care for patients in Suffolk with moderate and severe...

This is initially on a limited basis with referral via the GP. Posted on the service development website here http://nandsme.blogspot.com/2018/07/dr-luis-nacul-internationally-respected.html?m=1

Adrenaline can mask symptoms sometimes to a significant degree. If a patient is continually pushing themselves it can take a long wind down period of weeks or even months before there is a stabilisation. I have been fairly stable over the last month or so but over did things on Friday and...

Having thought about this further I think that a big problem is that AfME don't think there is a problem. I suspect that they are of the view that they have skillfully negotiated a path between BPS and biomedical to maximise revenue over the years and so continue to perpetuate themselves as an...

I agree with @Alvin that AfME have been trying to have the best of both worlds. I recall that years ago I had a phone call from them when I cancelled my membership. I told them that it was because of their support for the PACE trial. The response was deafening silence. I can't been the only...

@Trish some of the most popular meditations are ones that help with sleep. All of the meditations are scored by users and you can give feedback. You can bookmark your favourites and follow your favourite teachers.

If anyone reading this would like to dip their toe into meditation there is an excellent app called Insight Timer which has literally thousands of meditations, guided visualisations, talks, relaxing music, binural beats etc. It's all free. You can sort by teacher, genre, length of meditation etc...

I wonder if the substantial funding received by the LSHTM Biobank from the NIH last year has helped to bring about this change. Especially given the failure of the MEGA projects to secure funding.

I participated in the original study but unfortunately cannot continue to do so as I now take fludrocortisone for my blood pressure. Caroline also took samples from my husband as a healthy control. So even though we are in the depths of Suffolk we were two for the price of one I am however...

@Valentijn it is possible to have hypotension and POTS, although it is challenging to manage. The POTS UK website states: http://www.potsuk.org/types_of_pots

It's a double whammy for people with M.E.. M.E. is poorly understood and adequate GP care and specialist services patchy at best. On top of that the dysautonomia associated with M.E. is also poorly understood with care provision limited. I suspect that specialist services that cover both are...

@Wonko you asked about HR monitors. I use a Mio alpha 2. It can be set up to beep when you go over your AT. I also have a Polar A360 which vibrates when I go over my AT. Both have reasonable battery life and don't need a chest strap. I find the Mio more comfortable even though it is a bit...

Another good description of HRV here and summarised

Sorry for the delay in responding @Louie41 The FB group is "ME/CFS pacing with a heart rate monitor" If you ask to join please be patient, the mods are very busy as it is a popular group. Most recently I've found the group very helpful in finding my way round a new app I'm trying...

Both my brother and the husband of a friend's appear to have experienced a similar sort of psychotherapy whereby traumatic events were " put in a box". The memory of those events can no longer be accessed consciously at least. Both use the same terminology so it sounds like they had the same...

Just to add if you like accessing information via podcast, Elite (who have a good heart rate variability app) have a whole series on heart rate variability for those who would like a deep dive into the topic. The podcasts are aimed at people who are fit and well, nonetheless the ones that I...

@Trish briefly, heart rate variability is the time between each beat of your heart. Generally speaking higher heart rate variability is an indicator of better health. This is because it indicates that the body is more responsive to stressors and the changes within the body systems needed to...

@Valentijn and @Trish I'm not a fan of Facebook either. It does seem to bring out the worst in some people and it can be difficult to find information that you have previously found useful. However I have found the pacing with a heart rate monitor group one of the more "mature" groups and...

Attached is an example of a graph for the whole day on Monday from the Mio app. (Ignore the 1hr at the bottom, it's a glitch in the app) I also use the sports gear tracker app which records my heart rate as I go along and my average heart rate as I go. Average heart rate as I go along is very...

I've been heart rate monitoring seriously for about 6 months now and found it incredibly useful. Initially it felt really restrictive because I was continually going over my AT. Now I feel lost without it. I use a Mio Alpha 2. I chose this because it doesn't need a chest strap has reasonably...