• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Invite to Action for M.E.’s Severe M.E. Symposium & AGM, 14 Nov

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
Invite to Action for M.E.’s Severe M.E. Symposium & AGM

Friday 14th November 2014 10.00 – 4. 30 pm
Allen & Overy LLP, One Bishops Square, London E1 6AD

People with the most severe M.E. continue to face ignorance, injustice and neglect. This is simply unacceptable.

Join us for a creative dialogue that will bring together key stakeholders to identify what we can do, together, to improve the support and services for the most severely.

With a keynote presentation from Prof Hugh Perry, Experimental Neuropathology, the launch of our Severe M.E. Report following our Time to Deliver survey with over 2,000 people with M.E. amongst the presentations, this should be an informative as well as engaging event.

Places are very limited. For more information and to register now: www.actionsevereme.eventzilla.net
===============================

Personally, I'm delighted something like this is being done for those who are severely-affected and neglected (I lost too many years as severely-affected) and think having Hugh Perry there is a bit of a coup.
Professor V Hugh Perry | University of Southampton

(note he's Chair of the MRC's Neuroscience and Mental Health Board - the bit that funds any ME/CFS research)
 
Last edited:
Messages
44
Depends if it is part of an attempt to roll out the existing NICE CBT/GET clinics for the severely affected
Why should it be? The NICE guidelines make it clear that CBT and GET are not appropriate for the severely affected. Anyway, as the clinics have hardly any domiciliary services, how on earth are the severely affected supposed to get there? Moderately affected people can find that getting to the clinic is such an effort that it can offset any benefits from attendance. Why not take this at face value, as a genuine attempt to do something for a forgotten and neglected group of people? Surely trying to do something is better than doing nothing.
 

worldbackwards

Senior Member
Messages
2,051
Realistically, whether or not they wanted to roll out CBT/GET for the severely affected, this won't happen very soon - it would require money being spent on people who don't want that treatment, and given that there isn't money in mental health for people with genuine mental health conditions who do want, and would benefit from, treatment, I think we'll be left alone for a while yet at least.
 
Last edited:

Dolphin

Senior Member
Messages
17,567
Depends if it is part of an attempt to roll out the existing NICE CBT/GET clinics for the severely affected
I always am a bit nervous when the severely affected are discussed. I've come across quite a lot of mild or moderate people with ME themselves who think people are severely affected because they're not managing the illness well. With a lack of understanding of the causes of what causes ME, they're a very vulnerable group.
 

Min

Guest
Messages
1,387
Location
UK
Depends if it is part of an attempt to roll out the existing NICE CBT/GET clinics for the severely affected


Yes, this is a very real wory, especially as the only 'research' so far has ben the farcical failed £1.5 million FINE study.

I would like research into the pathogens found in the severely affected patients' spinal cords to be urgently undertaken before treatment is undertaken, as inappropriate treatment such as exercise could do so much harm and possibly kill.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Why should it be? The NICE guidelines make it clear that CBT and GET are not appropriate for the severely affected. Anyway, as the clinics have hardly any domiciliary services, how on earth are the severely affected supposed to get there? Moderately affected people can find that getting to the clinic is such an effort that it can offset any benefits from attendance. Why not take this at face value, as a genuine attempt to do something for a forgotten and neglected group of people? Surely trying to do something is better than doing nothing.

Because of this type of research. Note that 55% claim to be treating the severely affected but we know what the NICE guidelines said

"This study found from the responses to the questionnaire emailed between February and March 2013 that while 55% of adult CFS/ME services in the NHS in England treated severely affected patients, 33% did not, with the remaining services offering regular but minimal (by email or telephone) or occasional assistance to this patient group. This suggests that a substantial proportion of patients with severe CFS/ME lack access to face-to-face, local specialist care, even when they live in an area with a CFS/ME service."
..

"However, results from those services that do provide help for severe CFS/ME suggest that treatment is being offered in accordance with 2007 NICE guidelines1 including the use of MDTs and treatment individualised to patients including activity management, CBT and graded activity."

http://bmjopen.bmj.com/content/4/6/e005083.full?sid=643d58c3-f6ee-470e-a7d2-8ed30dee6ffa
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Videos from the Symposium.

Prof Hugh Perry discusses microglia:
www.youtube.com/watch?v=7oSEncRbu6E

Prof Hugh Perry - Q&As:
www.youtube.com/watch?v=MwuWanHhTXM

Dr Clare McDermott and Prof George Lewith of Southampton University:
www.youtube.com/watch?v=j-iD0trZPIc

Dr Clare McDermott and Prof George Lewith - Q&As:
www.youtube.com/watch?v=BZL5MSavEac

Carer's Testimony:
www.youtube.com/watch?v=cBLW99YvQnY

Severe ME report launch:
www.youtube.com/watch?v=_jr8bvplTAc

AGM:
www.youtube.com/watch?v=iRLur-bIawg
 

Dolphin

Senior Member
Messages
17,567
Videos from the Symposium.

Prof Hugh Perry discusses microglia:
www.youtube.com/watch?v=7oSEncRbu6E

Prof Hugh Perry - Q&As:
www.youtube.com/watch?v=MwuWanHhTXM
I read somewhere that he said in this talk at the event exercise is useful for neurological health (or something along those lines). However, one can't extrapolate to ME like that; there are many healthy foods that have gluten in them - it doesn't mean they should be recommended for coeliacs.
 
Last edited:

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I read somewhere that he said in this talk exercise is useful for neurological health (or something along those lines). However, one can't extrapolate to ME like that; there are many healthy foods that have gluten in them - it doesn't mean they should be recommended for coeliacs.
There's no mention of exercise in the first video. Perhaps it's in the Q&A session.

Perry's presentation is interesting - it's an easy-to-understand lay-person's explanation of the role of 'primed' microglia (in the brain) in chronic illness, in relation to ME/CFS. I'll post some more info about it a bit later. At 41mins 31secs, he mentions some ME research from Japan re microglia that I don't recall seeing before. Absolutely no hint of anything psychological or behavioural in the first video - he's very much approaching ME from an immunological/neurological perspective.
 
Last edited:

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Prof Hugh Perry presentation:
www.youtube.com/watch?v=7oSEncRbu6E


"So this idea might be that these microglia in these brain regions are primed, and even very low grade infections coming from the peripherals - Signals from low-grade infections could be sufficient to further activate the microglia and induce the symptoms of sickness behaviours."


The following info relates to the video, starting at 41mins 31secs:


Perry discusses an ME/CFS research paper that is exciting him, by Nakatomi et al, in Japan, looking for evidence of activation of microglia in patients with ME/CFS.

Small study - 9 participants.

Differences seen beween patients and controls.

Microglia appear to be more activated in brains of ME/CFS patients

- A strong correlation was found between poor cognitive scores and the amount of activated microglia in the amygdala.

- A correlation was found between levels of depression and the amount of activiated microglia in hippocampus.

- And a correlation was found between pain and the amount of activated microglia in region of the thalamus.



Published paper:

Neuroinflammation in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: An 11C-(R)-PK11195 PET Study.
Nakatomi Y, Mizuno K, Ishii A, Wada Y, Tanaka M, Tazawa S, Onoe K, Fukuda S, Kawabe J, Takahashi K, Kataoka Y, Shiomi S, Yamaguti K, Inaba M, Kuratsune H, Watanabe Y.
2014
J Nucl Med. 55:945-950.
http://jnm.snmjournals.org/content/55/6/945.full

Forum thread re this paper:
http://forums.phoenixrising.me/inde...tion-in-patients-with-cfs-me-pet-study.29219/

Edit: I see that Simon has blogged about this research, quite thoroughly. I've been a bit slow catching up with this line of research:
http://forums.phoenixrising.me/inde...up-microglia-could-be-driving-symptoms.30645/
http://forums.phoenixrising.me/inde...uroinflammation-encephalitis-in-me-cfs.29941/
 
Last edited:

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I read somewhere that he said in this talk at the event exercise is useful for neurological health (or something along those lines). However, one can't extrapolate to ME like that; there are many healthy foods that have gluten in them - it doesn't mean they should be recommended for coeliacs.
OK, I've watched the Q&A video now. He does discuss exercise in the Q&A session (at 5:25) but the discussion is not directly related to ME/CFS. It's a general scientific discussion in relation to how exercise regulates the immune system, discussing the benefits of physical activity for the brain, heart, and dementia etc. It wasn't any sort of suggestion that exercise is a therapy for ME/CFS. And he only mentioned it because there was a direct (off-topic) question about exercise from an audience member.
 
Last edited:

Dolphin

Senior Member
Messages
17,567
OK, I've watched the Q&A video now. He does discuss exercise in the Q&A session (at 5:25) but the discussion is not directly related to ME/CFS. It's a general scientific discussion in relation to how exercise regulates the immune system, discussing the benefits of physical activity for the brain, heart, and dementia etc. It wasn't any sort of suggestion that exercise is a therapy for ME/CFS. And he only mentioned it because there was a direct (off-topic) question about exercise from an audience member.
Ok, thanks.