Action for ME GP webinars

TiredSam said:
Having to call what I have "mild" is rather annoying, but it does need distinguishing from the much worse condition many are in. I suppose we could do what fast-food restaurants do when they want to avoid describing anything they sell as "small" and describe what I have as "regular" ME - but then what do we call the other two?
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Interesting idea, the others could Stay the same.
 
Cinders66 said:
The prognosis section suggests most people are just rising up to the surface - to remain mild - but not fully making recovery. Is this borne out by any evidence?
Mild is perhaps a term that needs ditching when grade one level ME often means no exerting physical activity, no late nights, vastly reduced social life but able to remain in some form of work. For a teenager especially, that reduction in normal life function is hardly mild. Obviously mild is a broad category and some semi recovered might also use that term
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There's a big difference between acute and then going on to suffer the consequences of the initial viral issue for the rest of ones life.

I get the feeling that the "mild" described here would be like describing someone who had a motorbike accident with multiple breaks including spinal cord damage and was intensive care who then came out of hospital a paraplegic as mild compared to the accident stage.

Its not mild after the acute stage its lifelong change of physical ability caused by the acute stage.
 
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Sly Saint said:
well it started here when AfME were 'welcomed' as members of S4ME; since then all I've seen is AfME soliciting information to try and make themselves more acceptable to the 'militant minority' without really giving anything in return.
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We won't get any change out of them without dialogue, and if they are here gaining information then at least there is a chance that they may start to have a better understanding of why their approach has been so harmful in the past, and still remains so to this day.

Plus, they may get more incentive to change due to greater scrutiny of their actions from others..
@dave30th on Facebook
Action For ME signed the latest open letter to The Lancet. I'm glad the organization made that decision. However, I also recognize the irony that it is signing a letter to correct a situation enabled by its own earlier actions. Whatever the motives, the partnership between Action For ME and the PACE investigators turned out to be a disaster. Action For ME's participation in PACE--which long predated the organization's current leadership--allowed the investigators to portray themselves as having listened and responded to community input. It is time for Action For ME to engage in some serious soul-searching, acknowledge its major role in this entire debacle, and apologize profusely for having had anything to do with PACE in the first place. It seems to me that's the only way it will ever begin to repair its rocky relationship with the patient community.
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Or would we rather that they hadn't signed the letter to the Lancet?
 
Andy said:
Or would we rather that they hadn't signed the letter to the Lancet?
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And if there were a similar letter about Crawleys trials do you think they would sign it?

eta: have they told their members they have signed it? I can't see anything on their website or their FB page or Twitter. Any references anywhere to David Tullers work over the last few years?
 
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I don’t want my GP to be educated on ME by Afme. It’s like asking Nigel Farage to educate MPs about the EU! I have severe progressive ME and it’s the advice dished out by the likes of Afme (who mostly represent vague fatigue/self limiting PVFS and recovered CFS/ME patients) which caused me to deteriorate from moderate ME to becoming progressively bedbound. Appalling that this organisation should be in the business of educating health professionals. You don’t speak for me and my fellow ME sufferers
 
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NelliePledge said:
surprisingly they did @Sly Saint
https://www.actionforme.org.uk/news/action-for-m.e.-to-sign-open-letter-to-lancet/
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Yes, I've just revisited the other thread about the letter and they made the same statement on FB. and on twitter.
Typically though it makes out that they were keen to sign (unlike the situation in 2016 with the original letter); jumping on the back of someone elses initiative when it suits.

But the facts remain that the influence of PACE, CBT/GET has partly endured for so long because of their support for both the trial and (apart from statements of 'surprise' at the results) the setting up of ME services providing the 'treatments'. It would appear that this continues despite their alleged 'change of heart'.

I'm guessing their relations with Crawley might be slightly jaded now, but there are still no condemnations of her 'research' and of course AfME s Head of Childrens Services is former Crawley backer Mary-Jane Willows.

[insert cynical emoji here]
 
Andy said:
We won't get any change out of them without dialogue, and if they are here gaining information then at least there is a chance that they may start to have a better understanding of why their approach has been so harmful in the past, and still remains so to this day.

Plus, they may get more incentive to change due to greater scrutiny of their actions from others..
@dave30th on Facebook



Or would we rather that they hadn't signed the letter to the Lancet?
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They’re not interested in dialogue with patients unless it fits their agenda. Any of us who don’t sing from their pro BPS hymn sheet are summarily blocked on social media/ignored. They have had 25 years of patients telling them that what patients want is proper biomedical research to find causes and treatments. Instead they have worked hand in glove with the BPS school of ME at every opportunity (including PACE) and continue to sit on the fence on behavioural treatments. Right now their head of children’s services (Crawley’s close associate) would be helping FITNET (internet CBT for kids/adolescents) cherry pick subjects for this £1m NHS funded trial (PI Esther Crawley). How many chances for dialogue do patients give them. ‘’Fool me once shame on you, fool me twice shame on me’’. Afme have shown no indication of wanting to distance themselves from the psych lobby with whom they have had too cosy a r’ship for decades. It’s not in their ethos to do so. We need new board of trustees who aren’t in the pocket of the government
 
They say that GET can be useful for 'a specific group' of patients, without specifying how such a group might be identified. Even if it has helped some, whoever they might be, its effects are unpredictable and therefore dangerous. This is an irresponsible statement they can't possibly back up.
 
@Action for M.E., at risk or repeating myself, both the FINE trial and the PACE trial showed no objective benefit from GET or directive CBT for ME or CFS or ME/CFS patients, and, what is more, neither trial showed even slight subjective benefits at long term follow up. They were null trails.

On what grounds, therefore, does Action for ME claim that GET or CBT helps some patients?

Given the well documented harms, it is both scientifically ignorant and completely irresponsible to go on including directive CBT, GET or any type of activity management that aims to continually increase activity in any advice to health professionals treating people with ME.

Action for ME is perpetuating the harm caused by the BPS cabal. It is time to speak out clearly and forcibly against the continued use of these therapies.

If your trustees, who I assume dictate policy on this vital issue, are so scientifically ignorant as to think it fine to sit on the fence, it is time they considered their position. They may have taken the role with good intentions, but they are doing untold harm with the continued prevarication that allows their website and their advice to health professionals to be based on misinformation.
 
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The question is, how will this prevarication look when litigation hits the courts.
Following the parliamentary debate, it is clear that this is envisaged ( there may be some seriously considering, or actioning this)

Myhill' s GMC complaints initiative may bring this to a very ugly head ( for some)
 
Trish said:
@Action for M.E., at risk or repeating myself, both the FINE trial and the PACE trial showed no objective benefit from GET or directive CBT for ME or CFS or ME/CFS patients, and, what is more, neither trial showed even slight subjective benefits at long term follow up. They were null trails.

On what grounds, therefore, does Action for ME claim that GET or CBT helps some patients?

Given the well documented harms, it is both scientifically ignorant and completely irresponsible to go on including directive CBT, GET or any type of activity management that aims to continually increase activity in any advice to health professionals treating people with ME.

Action for ME is perpetuating the harm caused by the BPS cabal. It is time to speak out clearly and forcibly against the continued use of these therapies.

If your trustees, who I assume dictate policy on this vital issue, are so scientifically ignorant as to think it fine to sit on the fence, it is time they considered their position. They may have taken the role with good intentions, but they are doing untold harm with the continued prevarication that allows their website and their advice to health professionals to be based on misinformation.
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Maybe it’s because they are a generic/vague fatigue organisation rather than a specificallyM.E. one? Chronic fatigue is a dust bin diagnosis convering many illnesses that have fatigue as a feature, and it can include psychogenic fatigue which responds positively to CBT/GET. Until ME and CF/CFS are adequately separated and heterogenous dust bin disgnosis fatigue patients excluded from ‘ME trials’ we are doomed to get spurious results
 
Trish said:
@Action for M.E., at risk or repeating myself, both the FINE trial and the PACE trial showed no objective benefit from GET or directive CBT for ME or CFS or ME/CFS patients, and, what is more, neither trial showed even slight subjective benefits at long term follow up. They were null trails.

On what grounds, therefore, does Action for ME claim that GET or CBT helps some patients?

Given the well documented harms, it is both scientifically ignorant and completely irresponsible to go on including directive CBT, GET or any type of activity management that aims to continually increase activity in any advice to health professionals treating people with ME.

Action for ME is perpetuating the harm caused by the BPS cabal. It is time to speak out clearly and forcibly against the continued use of these therapies.

If your trustees, who I assume dictate policy on this vital issue, are so scientifically ignorant as to think it fine to sit on the fence, it is time they considered their position. They may have taken the role with good intentions, but they are doing untold harm with the continued prevarication that allows their website and their advice to health professionals to be based on misinformation.
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More importantly, if they insist on this stance *despite proper evidence*, will they make similar claims about homoeopathy and other poorly proven (read: disproved) treatments, based on the fact some patients claim to benefit from that too?
 
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