short video summary of day 1 of Fibromyalgia Controversies conference

[desquinn]

Originally posted here: facebook.com/groups/fibroac... and day 2 will most likely go there. But providing youtube link here for FB phobic people

youtu.be/x56AYnsvYeY(Not working as expected?)

I recently attended the Fibromyalgia Controversies conference where experts in fibro spoke about recent research and what the future holds. There was also talk around how health systems across the world deal with fibro differently.

Also that a lot of the same frustrations are found no matter which country you are in. I thought I would do a quick (20 minute) video on what happened in day 1. Warn you it is a one pass attempt with some titles on it. So not much polish but I hope it gives you some idea of what the conference was about and the material that it covered.

I welcome any feedback and questions.

[redmaple-5]

Do the pain clinics across the UK who are treating patients with Fibromyalgia take part in this research?

[desquinn Partner Volunteer FMAUK Trustee in reply to redmaple-5]

The people at this conference are from all over the world including the UK. And the research can be multi site with some being conducted here in the UK.

I could not say if people in the pain clinics have taken part but I would be surprised if they had not. But it is important to realise the difference between research, clinical research and clinical practice.

Some of this research was only in animal models and some was in clinical practice and all the gaps inbetween.

[Cat00]

Thank you for taking the time to do this, it was very Interesting, cheers!

[Kitten-whiskers]

Thank you Des, this is fantastic news, It is great to know research is being done 😊

I do however hope that fibro doesn't get worse with age. This was really helpful

[Lillylilac]

Very interesting and thankyou so much for taking the time to do that's. It's very reassuring that the medical profession is doing research into the condition and that we have not been totally pushed aside. Thank you againKind regards Lilly

[desquinn Partner Volunteer FMAUK Trustee in reply to Lillylilac]

no problem at all and we will get the second day summary up as soon as we can. Just to add and set expectations, this research is always going on but it will normally have at least 2 -5 years for any project and longer for drug trials. Many more failures than successes but there is always research going on and every wrong turn informs the community and pushes us forward.

[Lillylilac in reply to desquinn]

Again thank you for taking the time.

[desquinn Partner Volunteer FMAUK Trustee]

The summary video of day 2 of the recent Fibro Controversies conference will be posted this afternoon about 1.30 on our FB support group and we will post it here in a couple of days time. So if you want to check it out first then you will find it at facebook.com/groups/fibroac... later.

Des

fibro controversies day 2 conference

[JayCeon]

Or: Click on the links in the youtube description.

0'00'' Intro

1'43'' Pain as a Symptom vs. Pain as a Syndrome (Eva Kosek). Chronic primary pain is now recognized as a disease in itself.

3'22'' Time to Stop the Fibromyalgia Criteria Wars (Jacob Ablin)

5'37'' Why do Drugs Work so Poorly in Fibromyalgia Patients? (Daniel Clauw): Drugs work for only 30%+ (brain scans being used to tell whom); (at 8'08'' : reference to another video with Prof. Irene Tracey, see end of this post).

9'10'' Marco di Carlo about „worsening with age“, which is not necessarily FMS itself.

10:01 FMS maybe belongs to a new {additional, 3rd} pain-definition/sort/category = „nociplastic pain“ {not noco-}, perhaps more relevant? (as opposed to nociceptive {by inflammation/tissue damage}, neuropathic {by nerve damage})

11:16 diet/biome/IBS correlations research difficult.

12:34 Small-Fibre Neuropathy and Neuropathic Pain: Differential Diagnosis and Therapeutic Approach (Andrea Truini) SFN co-morbid with FMS, but doesn’t seem to help us yet (13’).

13:28 How Stress Becomes Neuropathic Pain (Manuel Martinez-Lavin) modifiers, influencers or pain itself.

14:06 Central Sensitization: Neurophysiological Mechanisms (Emanuel van den Broeke): overreactivity.

14:35 Mechanisms of Pain in Rheumatoid Arthritis (Ernest Choy) risk factor (?12-20%?) with arthritis & AS {=ankylosing spondylitis} to get FMS.

15:21 Panel discussion 15:35: Difficulties for rheumatologists treating FMS, preferably multi-disciplinary team together e.g. with neurologist.

Link to the contents & thread of the 2nd video, day 2: healthunlocked.com/fibromya...

The long video with Prof. Irene Tracey Des refers to above: youtu.be/DOixCniuHTg(Not working as expected?)

[desquinn Partner Volunteer FMAUK Trustee in reply to JayCeon]

thanks and if you can message me the list as text I will add them. This was one of those things that I wanted to get back to and would like to do in future but the video was the "quick" way of relaying info in itself

thank you