He seems to be a true believer.
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RNZCGP GoodFellow Unit MedCases CPD Sept 2023: Chronic fatigue syndrome/myalgic encephalomyelitis
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He seems to be a true believer.
Andy
Retired committee member
rvallee
Senior Member (Voting Rights)
Fully-trained LP practitioners, uh? Well, if they are fully-trained then how could it be bad? Now that's evidence-based reasoning. You wouldn't want half-trained people, that's for sure.
Anyone notice the implication of "given her age" about LP? Not sure if it means that it's childish and therefore more suited to children, or that children are easier to manipulate. Probably both. The "decides to work with you on CBT" thing is really creepy. As if a child being told stuff like this by a doctor can do that. Holy manipulation, Batman.
Evidence-based medicine really needs to end. This paradigm has only lead the most significant regression in an expert profession, and probably nothing else. It's not even clear if the paradigm actually adds anything at all.
The process itself has become the industry, it is both the means and the ends. It doesn't have or tries to produce any useful outcomes. It merely exists, provides a steady flow of cheap excuses for anything anyone wants, as long as they can push it through a bureaucracy. It's fundamentally antiscience. Not just failing at science but rejecting it entirely. Alternative medicine with all the substance of alternative medicine but the cost and authority of scientific medicine. The absolute worst possible combination.
Anyone notice the implication of "given her age" about LP? Not sure if it means that it's childish and therefore more suited to children, or that children are easier to manipulate. Probably both. The "decides to work with you on CBT" thing is really creepy. As if a child being told stuff like this by a doctor can do that. Holy manipulation, Batman.
Evidence-based medicine really needs to end. This paradigm has only lead the most significant regression in an expert profession, and probably nothing else. It's not even clear if the paradigm actually adds anything at all.
The process itself has become the industry, it is both the means and the ends. It doesn't have or tries to produce any useful outcomes. It merely exists, provides a steady flow of cheap excuses for anything anyone wants, as long as they can push it through a bureaucracy. It's fundamentally antiscience. Not just failing at science but rejecting it entirely. Alternative medicine with all the substance of alternative medicine but the cost and authority of scientific medicine. The absolute worst possible combination.
The problem is, the words on their own mean something. Who wouldn't want medical practice to be 'based on evidence'? I guess it's the quality of the evidence that's the issue.
It's a bit like bio-psycho-social. Who wouldn't want medicine to think about the social context and the emotional impact on the person and their family?
So, if we go around saying 'enough of the 'evidence-based medicine'', it's easy for people, especially these doctors with the truly bizarre ideas, to see us and portray us as being anti-science.
Same for functional- it has a normal meaning about how something works and the synonym for psychogenic meaning. Almost as if there’s a (sub?) conscious approach to twisting meanings being taken 
rvallee
Senior Member (Voting Rights)
It is a cleverly chosen term. So generic as to be meaningless. Very political, diffuses any criticism of it as essentially invalid, because who indeed is against evidence?
Which is exactly why it is so awful, even dangerous. Like a tinpot dictator making their entire propaganda about justice, and calling any critic to be against justice. Who is against justice? These dangerous radicals, obviously. While I, the ruler, am for justice. It is obvious who is right, here.
Hence why the term is problematic in itself. It's a political statement, not a real descriptor of what is happening. But also probably why it can't be changed, because that would be framed as being against the idea of evidence in medicine. So now pseudoscience and quackery are likely impossible to dislodge at the core of medicine. Likely something that will push the adoption of AI medicine faster than it should be. Because AIs won't care about this junk, they'll care about scientific evidence.
Probably the only diffuser here is non-scientific evidence-based medicine. It may be evidence, but none of it is actually scientific. It is arbitrary and judgmental, no better than what a legislative committee would produce. Change the people, you change the outcome, and the outcome is only as good as the people and the process. No science anywhere in there. It's all about what people want and what they can convince others of.
But this is truly a bind, there is no good way out of this. Like trying to get a political party who keeps winning elections in a system to change to a system where they would win fewer elections. Good luck with that, it almost never happens.
Charles Shepherd and ME Association have responded on FB.
https://www.facebook.com/meassociat...AwUWntSiK3fRToFLdZinGX2VpHJbjVERe8gYr5RjCbWal
https://www.facebook.com/meassociat...AwUWntSiK3fRToFLdZinGX2VpHJbjVERe8gYr5RjCbWal
Sly Saint
Senior Member (Voting Rights)
Information on ME/CFS for GPs in New Zealand – Definitely not recommended.
September 21, 2023
Information on ME/CFS for GPs in New Zealand - Definitely not recommended. - The ME Association
fyi
M.E. Awareness NZ and ANZMES have connected with our Health and Disability Commission (HDC) over the past year about the risk of harms from the poor quality of clinical information on ME/CFS at GP education events.
HDC have been receptive, have given advice (which has been acted upon) and are actively watching the situation.
This is a summary of some of the action to date...
M.E. Awareness NZ and ANZMES have connected with our Health and Disability Commission (HDC) over the past year about the risk of harms from the poor quality of clinical information on ME/CFS at GP education events.
HDC have been receptive, have given advice (which has been acted upon) and are actively watching the situation.
This is a summary of some of the action to date...
- Health & Disability Commissioner
- 2023_02_27 Letter to HDC re GPCME stance on MECFS.pdf
- Meeting and email discussions with HDC have lead to the following letters being sent from ANZMES and M.E. Awareness NZ and copying them in...
- 2023_03_31 Medical Council Letter 31032023 ME Awareness ANZMES.pdf
- 2023_04_24 HQSC letter 240423 MECFS education.pdf
- 2023_04_24 Medical Deans letter 240423 MECFS education.pdf
- 2023_04_23 RNZCGP letter 230423 MECFS education.pdf
- Luke Bradford, Medical Director, RNZCGP, wrote that he would attend GPCME South to ensure ‘balanced presentation of evidence’
2023_05_31 RNZCGP reply Medical Education on ME CFS.pdf
- Fiona replied asking if they will also have someone at GPCME Rotorua for the same reason.
2023_06_06 ANZMES reply to RNZCGP letter re Medical Education.pdf
- Luke Bradford, Medical Director, RNZCGP, wrote that he would attend GPCME South to ensure ‘balanced presentation of evidence’
- We understand that HDC and Human Rights Commission (HRC) (edit: not HQSC as I originally wrote) have written to RNZCGP themselves.
- As a result, we have been advised that RNZCGP are reviewing their endorsement processes and looking to have key note speakers at their conference in 2024 (GP24, not GPCME).
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One step forward and three steps backwards sometimes.
I think it is fair to say that the previous advocacy efforts with the NZMA were the direct cause of the plenary session on CFS at GPCME 2023 Rotorua including five 'experts' who support the anti-NICE stance. So a backfire there.
It is progress that the conversation now includes a wider group of players who do have some responsibility (HDC, HQSC and RNZCGP). Whether they step up is yet to be seen. The HDC rely on the medical bodies for clinical guidance, so it is tricky.
This may have been answered elsewhere.
The Goodfellow Unit is within Auckland University and has a role in providing education for health professionals. They are endorsed by the RNZCGP to deliver this education and people attending their education can obtain Continuing Medical Education (CME) credits.
Goodfellow and RNZCGP are completely different organisations.
Bruce Arroll has a very high reputation within medical circles in NZ.
I have felt rather 'engaged' shall we say, about this. Arroll promoting the Lightning Process, the terrible Medcase recommending the Lightning Process, and Luke Bradford's superficial response. I think Bradford may not be a lost cause, we just need to help him understand e.g. to get beyond an assumption that 'an RCT finding the Lightning Process works is unquestionable'.
I'm attaching a letter I've written to Bradford at the Royal NZ College of GPs; I haven't sent it. It could be modified to (also) be sent to the University of Auckland's School of Population Studies (who run the Goodfellow Unit).
The letter is very long, and it's focussed on explaining why the RNZCGP should not do anything with the Lightning Process (or the Switch) ever again. It does have a structure though, so I hope that the reader might keep reading to the end. It could be polished a bit more yet. It is written in my voice, rather than a more formal style, again because I hope that the reader will get to the end.
I'm happy to send it from myself, if it does not clash with any existing advocacy strategy or work done. Sometimes multiple approaches and repetition can bear fruit. I'm also happy for the content to be recycled, and used by someone else if that is going to work better. But I do really want to get much of the information to the decision makers one way or another.
These are the sections:
1. The background of the developer of the Lightning Process
2. The Lightning Process description
3. No evidence of efficacy in ME/CFS (Smile trial)
4. NICE Guideline recommends against the Lightning Process
5. Promotion of the Lightning Process for ME/CFS by Dr Bruce Arroll
@RoseE
Draft letter attachment deleted - later version further on in the thread
I'm attaching a letter I've written to Bradford at the Royal NZ College of GPs; I haven't sent it. It could be modified to (also) be sent to the University of Auckland's School of Population Studies (who run the Goodfellow Unit).
The letter is very long, and it's focussed on explaining why the RNZCGP should not do anything with the Lightning Process (or the Switch) ever again. It does have a structure though, so I hope that the reader might keep reading to the end. It could be polished a bit more yet. It is written in my voice, rather than a more formal style, again because I hope that the reader will get to the end.
I'm happy to send it from myself, if it does not clash with any existing advocacy strategy or work done. Sometimes multiple approaches and repetition can bear fruit. I'm also happy for the content to be recycled, and used by someone else if that is going to work better. But I do really want to get much of the information to the decision makers one way or another.
These are the sections:
1. The background of the developer of the Lightning Process
2. The Lightning Process description
3. No evidence of efficacy in ME/CFS (Smile trial)
4. NICE Guideline recommends against the Lightning Process
5. Promotion of the Lightning Process for ME/CFS by Dr Bruce Arroll
5.1 Goodfellow MedCase on 'CFS/ME'
5.2 Association with Professor Paul Little
5.3 Professor Bruce Arroll’s background in NLP
5.4 Professor Bruce Arroll’s association with a Lightning Process practitioner
5.5 Arroll and Oliver’s September 2022 defence of the Lightning Process
6. Conclusion and requests (mentions Cathy Stephenson as a potential resource for the RNZCGP to continue informing GPS about ME/CFS - she probably should be asked if it is ok to mention her.)5.2 Association with Professor Paul Little
5.3 Professor Bruce Arroll’s background in NLP
5.4 Professor Bruce Arroll’s association with a Lightning Process practitioner
5.5 Arroll and Oliver’s September 2022 defence of the Lightning Process
@RoseE
Draft letter attachment deleted - later version further on in the thread
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That's a really good letter, @Hutan.
Just a couple of points. LP practitioners have no clinical training and get around rules about who can claim to treat diseases by calling what they do 'training' rather than 'therapy'.
I think a few links would be a good idea, specifically to the Norwegian patients website telling their stories of harm from LP, Jonathan Edwards expert submission to NICE, and Carolyn Wilshire et al reanalysis of PACE.
Just a couple of points. LP practitioners have no clinical training and get around rules about who can claim to treat diseases by calling what they do 'training' rather than 'therapy'.
I think a few links would be a good idea, specifically to the Norwegian patients website telling their stories of harm from LP, Jonathan Edwards expert submission to NICE, and Carolyn Wilshire et al reanalysis of PACE.
Thanks Trish.
There are 22 footnotes with links so far - maybe they didn't upload? One is to the Norwegian patient website. I wanted to add JE's submission, but hadn't got around to finding it yet.
I haven't incorporated the reanalysis of PACE because I say that I'm not really covering that, the focus is the Lightning Process (the document would be even longer). I think the arguments about CBT and GET really need a dedicated letter.
No, they don't appear on the document when I download it. Probably the fault of my computer as I don't have docx and it sometimes doesn't download docx at all.
JE's submission:
https://www.nice.org.uk/guidance/ng206/evidence/appendix-3-expert-testimonies-pdf-333546588760
I take your point about not including PACE stuff.
A fantastic letter and tour-de-force.
Minor typos that I happened to notice—
RCNZGP -> RNZCGP
reported -> reported
"no evidence that ME/CFS is in a psychosomatic condition where" -> "no evidence that ME/CFS is a psychosomatic condition where"
"the 2021 NICE Guideline on ME/CFS7 is definitive" (double space)
"biomedical reseearchers"
"any treatments that aim to make people to believe"
"Arrol" -> "Arroll"
Minor typos that I happened to notice—
RCNZGP -> RNZCGP
reported -> reported
"no evidence that ME/CFS is in a psychosomatic condition where" -> "no evidence that ME/CFS is a psychosomatic condition where"
"the 2021 NICE Guideline on ME/CFS7 is definitive" (double space)
"biomedical reseearchers"
"any treatments that aim to make people to believe"
"Arrol" -> "Arroll"
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