United Kingdom: Action for ME (AfME) news

Action for M.E. held their AGM last week. They were unable to include the CEO Forward Look and Q&A within the event as planned so have

"set a date for a webinar on 28 September 2021, 3 – 4pm where you can hear from our Chief Executive, Sonya Chowdhury and Medical Advisor, Dr David Strain, about our exciting plans for the future. You can register for the webinar by following this link: https://us02web.zoom.us/webinar/register/WN_wEpAuOZBQtupqIDH__Ld0w

We will do our best to answer all questions within the webinar itself. If you would like to submit a new question please email this to media@actionforme.org.uk by 10am on the day of the webinar."

Attached is their annual report 20-21.
 

Attachments

I commented on this too, both directly to the M.E. Trust (I use the physio services) and via the online form.

Had an email from the M.E. Trust this morning saying that the respective boards have decided to go ahead with the merger. Very sad this is happening.

As a valued supporter of the ME Trust, we contacted you in August to let you know that we were exploring a merger with Action for ME. I am now writing to let you know that yesterday our respective boards agreed to proceed with the merger. We now anticipate merging both charities and launching our combined service offer at the end of November/early December 2021.
Action for M.E. is a UK charity which takes action to end the ignorance, injustice and neglect faced by people with M.E. Along with providing information, support and advice to people to help improve their health and well-being, Action for M.E. works with professionals to enhance the care and support that people with M.E. receive and funds pilot research projects to advance knowledge of the illness.
Both charities remain frustrated by the current lack of provision for people with M.E, and other post viral syndromes. A postcode lottery often determines access to specialist services and there is huge variability in what these services provide. There is simply not enough support for children and adults with M.E. now, let alone with an increase in diagnoses following the long-term impact of Covid-19.
This merger will allow us to combine the power of our organisations and strengthen the services we offer to people with M.E. We will be able to scale up the whole person clinical care and support that we currently offer and fill the gaps in provision more quickly.
The merged organisation will be known as Action for M.E. and Sonya Chowdhury will remain as CEO. I will join the organisation in a new role as Director of Healthcare Services.
We will continue to provide updates on our website, on social media and through our direct communications with partners and stakeholders. Please see our FAQ for further information
There will be an online Q&A webinar with Sonya Chowdhury (CEO, Action for M.E.) and Helen Winning (CEO, The M.E. Trust) on 21 September at 2pm where we will answer further questions about the decision to merge. You can sign up to join the webinar HERE.
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Trish said:
and swift cleanup of all AfME's publications, and distancing itself completely from the people from the Bristol clinic who, as I understand it, have continued to play a large part in their production of materials.
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Could you point me to more information about the Bristol clinic's part here please? I went through the Bristol clinic.

Thanks
 
Haveyoutriedyoga said:
Could you point me to more information about the Bristol clinic's part here please? I went through the Bristol clinic.

Thanks
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AfME is based in Bristol, and has in the past had a close association with a Bristol ME/CFS clinic, with their staff producing or being involved with producing some of AfME's advisory materials for people with ME/CFS and for clinicians. It's a while since I have had time to look at their website. We have had some discussions on various threads on the forum about particular materials, some of which have been updated or removed. I don't know the current relationship between AfME and the Bristol clinic.
Here's a list of threads with AfME tagged.
https://www.s4me.info/tags/afme/
 
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19:17 Dr Strain talks about the PACE trial
well the only high
19:12
big
19:13
study that's been done in me
19:15
is the pace trial
19:18
now we know there are lots of smaller
19:20
studies but this is the the largest
19:23
and one of the problems
19:25
one of the many problems with this study
19:27
is the criteria they used at the time
19:30
was the oxford criteria
19:32
that criteria that i mentioned that
19:34
specifically did not exclude people who
19:37
had other causes of their fatigue
19:41
those who might be living with
19:42
depression or anxiety or many other
19:44
causes
19:46
so it included those people within the
19:49
study
19:50
i want to stress this is not a criticism
19:53
of those investigators who actually set
19:57
about this in good faith when they did
20:00
so
20:01
at the time that they were given advice
20:04
with retrospect that was wrong advice
20:07
and they've acknowledged that
20:09
that this has been a key problem with it
20:13
because the advice that they had at the
20:15
time
20:17
led them to recruit people who well
20:20
basically
20:21
did not have what we would today is
20:24
called myalgic and kepler myelitis
20:29
now the key outcome they reported at the
20:32
time was it 22 percent of people
20:34
returned to normal when they get the
20:36
cognitive behavioral therapy and or the
20:39
graded exercise therapy and only eight
20:42
percent of people got that with the um
20:45
the usual care
20:47
and then that apt adaptive pacing
20:50
therapies they also reported no adverse
20:53
outcomes
20:55
at all
20:57
however
20:58
that's the bit that's triggered the most
21:00
problems down the line you see what they
21:02
reported is 22 percent of people are
21:05
returning to normal
21:07
and what they regarded as normal
21:11
was actually lower than the entry
21:13
criteria to coming into the studies
21:17
it's important to say that the
21:19
the population that they studied was
21:21
predominantly in the 35 to 45
21:25
so their exercise level should have been
21:27
scoring somewhere around and um 85 to 95
21:33
what they regarded as normal was 60 and
21:35
the entry criteria to get into the study
21:37
was 65.
21:40
therefore saying that this is a positive
21:43
outcome
21:44
is
21:46
at best
21:47
uh a misrepresentation
21:51
however this has caused the greatest
21:53
amount of controversy within the me
21:56
community because many people with true
22:00
me many people with post exertional
22:02
malaise
22:04
will tell you
22:05
that if they exercise it takes them
22:08
longer to recover
22:10
from the exercise
22:13
then the benefit that they get from that
22:15
exercise would last in their body
22:18
if you imagine you take two you do an
22:20
exercise and you expect to feel better
22:22
for three days after exercise and
22:24
therefore if you exercise again within
22:27
two days you'll feel better and if you
22:29
exercise again within two days you'll
22:30
get stronger and stronger and stronger
22:33
if you're living with md
22:35
if you did exercise
22:37
it would take you four or five days to
22:39
recover from that
22:41
the net result of that is all the
22:43
benefit from the exercise has gone and
22:45
actually you lost a bit more of your
22:47
fitness
22:49
while you were trying to recover from
22:51
that exercise
22:54
as a result when we survey people when
22:56
we speak to people who've gone through
22:58
this graded exercise therapy
23:01
the vast majority tell us
23:03
that
23:04
it causes more harm than good
23:08
as a result studies into long cove it
23:12
are rapidly losing the exercise on
23:16
far more aligning themselves to adaptive
23:19
pacing therapy
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Sly Saint said:
19:17 Dr Strain talks about the PACE trial
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Nice to see this.
Small quibble: I'm sceptical about the idea that the PACE Trial investigators are not to blame for using the Oxford criteria, that they used it because of advice they got? I know, for example, that Peter White is very much his own man and would consider himself very knowledgeable and not in need of advice on this topic, nor the sort of person who lets himself get dictated to by others.
 
19:50
i want to stress this is not a criticism
19:53
of those investigators who actually set
19:57
about this in good faith when they did
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Good faith? I guess it's sometimes difficult to tell whether the BPS brigade are quacks or con men. There's a video of Peter White slagging off the CCC because it has "too many" symptoms and he says the more symptoms there are, the more likely the illness is psychiatric. Basically trying to put patients off using stricter criteria.

I wonder whether AfME think it was good faith when Simon Wessely defended the outcome switching in the PACE trial.

Found it:
 
"at the time that they were given advice
20:04
with retrospect that was wrong advice
20:07"

According to the TMC minutes

Professor Sharpe also explained that direct communication had taken place between Professor White and the authors of the Canadian criteria who confirmed that as written these are not suitable for research purposes and would require ad hoc operationalisation. This coupled with the fact that the procedures themselves can be intrusive suggests we should not use the Canadian criteria. The TSC were satisfied with this explanation.
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https://www.s4me.info/threads/canadian-consensus-criteria-not-suitable-pace-trial-minutes.8394/

hmm.
 
An article in The Times today by Sonya Chowdhury:
https://www.thetimes.co.uk/article/long-covid-and-me-patients-deserve-a-better-approach-3vtbb32h7

Long Covid and ME patients deserve a better approach

When I became chief executive of Action for ME in 2012, I never imagined I would personally experience what I was advocating for in my professional life. But in 2013 my youngest son was diagnosed with ME (myalgic encephalomyelitis). The merger of my professional and personal lives gave me a frightening new perspective on the distressing experiences of more than 250,000 sufferers and their families who receive inadequate support and are left with nowhere to turn.
[...]
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The article goes on to describe the large numbers with Long Covid now being diagnosed with ME, ongoing problems with stigma, the need for better care, the merger of AfME with the ME Trust, and Decode ME.
 
Opinion piece: How Is M.E. Treatment Impacting Patients’ Right To Healthcare? by Sonya Chowdhury

"Imagine knowing you’re ill and explaining your symptoms to the doctor, only to have them stop listening halfway through because they’ve already diagnosed you and everything you say will confirm their preconception: it is stress, you’re working too hard or something similar. The disabling physical symptoms of extreme fatigue, muscle aches, headaches, dizziness, and many others are dismissed. Or you’re just not trying hard enough to get better.

Access to healthcare is a human right, and it’s one being denied to a large proportion of a quarter of a million children and adults living with M.E./CFS in the UK alone. It has a long history of being dismissed and trivialised, leading to patients being neglected by medical professionals, forgotten by researchers and ignored by the government."

https://eachother.org.uk/how-is-m-e-treatment-impacting-patients-right-to-healthcare/
 
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