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Exercise & ME/CFS event at Bristol Watershed.

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Just watching Mark Van Ness's talk - its really clear and informative on exercise testing (pacific fatigue lab).
I like the term Post Exertional Amplification - PEA- that they have come up with to discuss not just feeling bad after exercise but feeling worse over a period of up to 7 days, with in fact some symptoms worsening the further away you get from the exercise test.

Really great stuff! Now how to force everyone in the world to watch this...

sorry I cant work out how to put the video directly on here - tried a few things, but cant work it out - can anyone do this?
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
I haven't seen these posted on PR, so apologies if I have duplicated a post.

It is the videos of the talks by Prof VanNess, Dr Speight and E. Bowman at Bristol, UK on February 5th 2014, following a showing of Voices from the Shadows.

Enjoy!



http://voicesfromtheshadowsfilm.co.uk/exercise-mecfs-event/

Presentations from the “Exercise and ME/CFS” evening in Bristol on Feb 5th at the Watershed – with Prof Mark VanNess, Dr Nigel Speight and Erinna Bowman following a screening of “Voices from the Shadows”.
More information about the “Exercise and ME/CFS; the evidence” event is in this post.

Prof Mark VanNess from the Workwell Foundation explains how damaging aerobic exercise can be for patients with ME/CFS. The Workwell 2 day testing protocol demonstrates the astonishing post exertional amplification of symptoms in ME patients; a hallmark symptom of ME. This damage to the aerobic energy system means that it is utterly counter productive to try to use aerobic exercise, such as graded exercise therapy, to improve health in these patients.

The evidence from the Warkwell research is so unexpected and contrary to accepted views of exercise and graded exercise, both in ME and in other illnesses, that many people actually find it difficult to hear and take on-board what he is saying. Fortunately you can go over what he says repeatedly and follow up the links on the Workwell Foundation website to watch or read other information.

Interestingly, he reflects on comments made in the film, explaining that these are consistent with their evidence from cardiopulmonary testing. He also explains how patients can try to find a more appropriate way of managing their activities of daily living and exercise, by trying to avoid causing any worsening of symptoms and so allowing their bodies a better chance of healing. He explains about analeptic exercise, which means restorative; not causing relapse!



Dr Nigel Speight talks about some of the kinds of cases where he is asked to try to protect children from being mistreated by professionals who are misinformed about ME, or abdicating responsibility. He is the medical advisor or paediatric medical advisor for 5 charities, including the ME Association, TYMES Trust and significantly, The 25 % Group (for the severely affected), who have been unable to find anyone more suitable to help in severe cases. Dr Speight, more than anyone else in this country, sees the worst cases; the cases where people are most ill and the cases where children are being mistreated and families threatened with having their ill children taken from them or forced to under go harmful treatment programmes. This video shows the anger and frustration with the current state of affairs that such scenarios evoke in a caring paediatrician. He describes his supportive and empowering management approach to the illness, which recognises that children are suffering a severe physical illness. Another video with Dr Nigel Speight talking to Rob Wijbenga, which Josh filmed last summer, can be seen here.


Erinna Bowman is part of the Cure ME team at the London School of Hygiene and Tropical Medicine. As well as explaining some back ground information about their work she covered some of the essential issue that have contributed to the confusion around the diagnosis and treatment of patients revealed by the previous speakers. She mentioned the wide variety of definitions and the wide predictions of prevalence resulting from such varied definitions. Clearly CFS to Mark VanNess is not the same as the conditions loosely called CFS here in the UK! The Cure ME Team is working with quite precise research criteria in comparison with the general NHS and NICE definition. Erinna explains about their major new research projects funded by the USA’s NHI which will involve immunological, virological and gene expression analyses and describes their previous work on the biobank and its further development as a result of the new funding.



Erinna Bowman, Prof Mark VanNess and Dr Nigel Speight answered questions, chaired by Sue Waddle


Bristol Watershed ‘Exercise and ME/CFS: the evidence’ event.
 

Seven7

Seven
Messages
3,444
Location
USA
If we make a campaign to bring machine and train personal to all excellence centers for ME, we will move forward much faster.
 

Sidereal

Senior Member
Messages
4,856
What excellence centers for ME? o_O

The "specialist" ME clinics in places like the UK and the Netherlands where people are prescribed CBT brainwashing to ignore worsening symptoms and engage in harmful aerobic exercise therapies? They could do with this machine, although as the speaker pointed out, these machines are common equipment. It's the people who know how to use them correctly in ME that are uncommon. :woot:
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
The exact definition of a "Centre of Excellence" is the number of qualified folk employed by the centre.

I don't know what the number is, but once it has been reached, it becomes a "Centre of Excellence".

Far from what the name suggests, it is no indication of quality or of excellence, just the number of staff.
 

SOC

Senior Member
Messages
7,849
The "specialist" ME clinics in places like the UK and the Netherlands where people are prescribed CBT brainwashing to ignore worsening symptoms and engage in harmful aerobic exercise therapies? They could do with this machine, although as the speaker pointed out, these machines are common equipment. It's the people who know how to use them correctly in ME that are uncommon. :woot:
As if those centers would be willing to do CPET testing even if the equipment and staff was donated. :rolleyes: Actual data about the reality of exercise in ME/CFS would destroy their belief-based system, and they wouldn't have that. Sheesh.