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MAIMES: Would you like a Public Enquiry into the lack of care and treatment for people with M.E?

wdb

Senior Member
Messages
1,392
Location
London
What proof do you have @wdb that this is utter nonsense?

(@wdb was referring to the following statement by Dr Myhill: By contrast practitioners working outside conventional "NICE Guidelines have established many effective treatments which are safe and efficacious and which get people back to work and off benefits")

Note that Dr Myhill is not saying here that these treatments are effective in getting everyone back to work. I honestly don't know if these treatments are effective in getting anyone back to work. However, personal experience, claims made by other practitioners, and a huge amount of anecdotal evidence leads me to wonder if these treatments might well be very effective for some patients, perhaps many.

The burden of proof is on Dr Myhill who made the claim that there are many effective treatments not on me to disprove it. What are these treatments and where is the evidence ? I've not heard of any treatment for which there exists anything close to sufficient evidence to justify declaring it effective at treating ME/CFS, I thought that was widely accepted.
 

Laelia

Senior Member
Messages
243
Location
UK
The burden of proof is on Dr Myhill who made the claim that there are many effective treatments not on me to disprove it.

I think we all need to be careful about making absolute claims about things that we cannot prove (including statements like "this is utter nonsense"). ;)

I've not heard of any treatment for which there exists anything close to sufficient evidence to justify declaring it effective at treating ME/CFS, I thought that was widely accepted.

What qualifies as "sufficient evidence" to justify declaring that a treatment is effective a particular condition? Are there any set rules or regulations regarding what a doctor can or can't declare?

[Edit: Sorry changed my questions slightly]
 
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Messages
15,786
I've not heard of any treatment for which there exists anything close to sufficient evidence to justify declaring it effective at treating ME/CFS, I thought that was widely accepted.
Perhaps she was referring to many of the symptoms of ME/CFS, rather than ME/CFS itself? There's plenty of research into treating pain, sleeping problems, OI, muscle twitches, etc, even if it doesn't specifically involved ME/CFS patients.
 

Laelia

Senior Member
Messages
243
Location
UK
Perhaps she was referring to many of the symptoms of ME/CFS, rather than ME/CFS itself? There's plenty of research into treating pain, sleeping problems, OI, muscle twitches, etc, even if it doesn't specifically involved ME/CFS patients.

You may be right @Valentijn but I get the impression Dr Myhill is talking about more than symptom relief given that she says that these treatments can "get people back to work and off benefits".
 
Messages
1,478
You may be right @Valentijn but I get the impression Dr Myhill is talking about more than symptom relief given that she says that these treatments can "get people back to work and off benefits".
Which is quite a bold statement....I would like to see some figures for that. How many patients has she treated, how many went back to work and stayed at work after her treatment? This isn't hard to define I would imagine.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I think we all need to be careful about making absolute claims about things that we cannot prove (including statements like "this is utter nonsense"). ;)

What qualifies as "sufficient evidence" to justify declaring that a treatment is effective a particular condition? Are there any set rules or regulations regarding what a doctor can or can't declare?

There a lots of things we cannot prove that are reasonable to be sure about. I am pretty sure claims to have discovered how to make cheap energy from cold fusion are nonsense. I am pretty sure that the suggestion that there are treatments that get people with ME back to work that the NHS is blocking is nonsense. it is not that difficult to decide.

Sufficient evidence is evidence that provides good reason to think there is a cause and effect relation between treatment and improvement. Mostly that boils down to doing controlled studies where you show that without the treatment, with everything else being equal, there is no improvement. And you have to make sure there is no room for cheating (like cherry-picking results) because people always cheat. As far as I know there are no treatments with reliable evidence of efficacy in the sense of getting people back to work etc. If nobody has done the proper controlled studies the evidence cannot exist. For some conditions the outcome without treatment is so predictable that controls are not always needed, but that does not apply to ME.

So it is not a question of rules or regulations. it is the quality of the evidence as judged by reasonably intelligent people who are experienced in the pitfalls that need to be avoided. Generally speaking doctors will agree pretty unanimously on whether or not there is reliable evidence - unless of course they have a vested interest in the treatment!
 

MEMum

Senior Member
Messages
440
I don't think we can expect Dr Myhill to do double-blind placebo controlled etc studies, given that all her patients are paying.
However I feel that if significant numbers were getting well enough to return to work and get off benefits, then more of the ME community (PwME and carers) would have heard about it.
Any comments I remember seem to have been of small, incremental changes.
 

Laelia

Senior Member
Messages
243
Location
UK
I am pretty sure that the suggestion that there are treatments that get people with ME back to work that the NHS is blocking is nonsense. it is not that difficult to decide.

I'm just not sure that there is enough evidence to demonstrate that what Dr Myhill is saying is nonsense. I really don't think it's that simple.

If nobody has done the proper controlled studies the evidence cannot exist.

But evidence comes in more forms than just controlled studies. For example, the NICE guidelines are determined using a variety of sources of evidence, not just scientific research.

From the NICE website:

"NICE guideline recommendations are based on the best available evidence. We use a wide range of different types of evidence and other information – from scientific research using a variety of methods, to testimony from practitioners and people using services."


 

Laelia

Senior Member
Messages
243
Location
UK
Which is quite a bold statement....

Yes it is!

I would like to see some figures for that.

Me too.

I know doctors have to do clinical audits to assess treatment outcomes but I'm unsure how vigorous this process is (can anyone enlighten me?). I found one mention of an audit on Dr Myhill's website on this page but it only involved a small number of patients:

http://www.drmyhill.co.uk/wiki/Chances_of_recovery

Not quite the level of detail that we're after but interesting nonetheless.
 

Laelia

Senior Member
Messages
243
Location
UK
Generally speaking doctors will agree pretty unanimously on whether or not there is reliable evidence

I'm even less convinced about this than I am about there being proof that Dr Myhill is talking a lot of nonsense! It seems to me that doctors hardly ever agree on anything, even when there are no vested interests involved!

And even when those "reasonably intelligent people" do agree unanimously they are quite often wrong about it (hence the need to update the recommendations, withdraw treatments etc)!
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I'm even less convinced about this than I am about there being proof that Dr Myhill is talking a lot of nonsense! It seems to me that doctors hardly ever agree on anything, even when there are no vested interests involved!

And even when those "reasonably intelligent people" do agree unanimously they are quite often wrong about it (hence the need to update the recommendations, withdraw treatments etc)!

Doctors in the private sector with vested interests disagree all the time, indeed. But at a journal club session in a university hospital department when a treatment is being discussed there is nearly always complete agreement on what is reliable evidence and what is not. That is probably not apparent from the popular press but they also have a vested interest in controversy.

The people who agree unanimously on the reliability of evidence do not often get things wrong. Recommendations tend to get changed by bodies like NICE who have huge vested interests in saving cash and routinely get things wrong. Updating recommendations also tends to occur when an unexpected adverse reaction is discovered, but evidence for efficacy rarely changes once reliable evidence has been presented.

The bottom line is that whatever Dr Myhill is referring to it does not even come on the radar of people who want to see reasonably reliable evidence. There is no point in complaining about the bad science of PACE if it is suggested that CBT and GET should be replaced by treatments based on even worse science if any at all. We need a level playing field.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I'm just not sure that there is enough evidence to demonstrate that what Dr Myhill is saying is nonsense. I really don't think it's that simple.

But evidence comes in more forms than just controlled studies. For example, the NICE guidelines are determined using a variety of sources of evidence, not just scientific research.

From the NICE website:

"NICE guideline recommendations are based on the best available evidence. We use a wide range of different types of evidence and other information – from scientific research using a variety of methods, to testimony from practitioners and people using services."

Sorry I am replying in reverse order.

The reasons for saying that Dr Myhill is talking nonsense are very simple - she has no reliable evidence to support what she says.

Reliable evidence rarely comes from anything but controlled studies. As indicated above, NICE is a tool of government for saying NO whenever possible. I never took any notice of it and then retired when I had to. It is quite a joke that they say their recommendations are based on testimony from practitioners etc. As far as I know NICE have never approved a treatment based on testimonies from practitioners or patients. They just say that. It is presumably put in as a sop to people who like that sort of thing. The only reason they approve CBT and GET, despite absence of reliable evidence, is that it saves money - you can get the patient seen by a cheap therapist rather than a doctor.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I don't think we can expect Dr Myhill to do double-blind placebo controlled etc studies, given that all her patients are paying.
However I feel that if significant numbers were getting well enough to return to work and get off benefits, then more of the ME community (PwME and carers) would have heard about it.
Any comments I remember seem to have been of small, incremental changes.

But if Dr Myhill has not done a proper trial she was presumably handing out treatments when she has no idea if they work or not. I very much doubt she said to patients 'I have no idea if this works or not but try it because I have a theory it will work that I will never actually know the validity of because I am never going to test it properly'. We have every reason to expect Dr Myhill to do proper trials if she is going to recommend things in books and in her clinic.
 

user9876

Senior Member
Messages
4,556
It is quite a joke that they say their recommendations are based on testimony from practitioners etc. As far as I know NICE have never approved a treatment based on testimonies from practitioners or patients. They just say that. It is presumably put in as a sop to people who like that sort of thing.

I had assumed they say this to cover treatments that have been used successfully for many years but because they have been used for so long there are no trials.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I know doctors have to do clinical audits to assess treatment outcomes but I'm unsure how vigorous this process is (can anyone enlighten me?). I found one mention of an audit on Dr Myhill's website on this page but it only involved a small number of patients:

http://www.drmyhill.co.uk/wiki/Chances_of_recovery

Not quite the level of detail that we're after but interesting nonetheless.

Audits are generally a waste of time because they are not controlled. They are useful as ways of checking that you are doing what your policy is to do but of no use in telling you whether or not treatments work. For that they are bad science.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
I'm just not sure that there is enough evidence to demonstrate that what Dr Myhill is saying is nonsense.
The amount of evidence needed to demonstrate that what Dr Myhill is saying is nonsense is zero, so there's enough. If she provides no evidence for her claims then she hasn't given anyone any reason to believe them or to go to the effort of disproving them, there's nothing to disprove.

She may have a bunch of anecdotes and a band of followers, but so has every quack homeopath and bioresonance practitioner. That's not enough to be taken seriously.
 

Aurator

Senior Member
Messages
625
NICE is a tool of government for saying NO whenever possible.
I'm saving that.

I'd like to think there was a time when the blatant doublespeak inherent in calling an organisation with such a grim mandate NICE would have attracted wider scorn than it does now. Maybe I'm just a deluded laudator temporis acti and, where state healthcare is concerned, there never was such a time.
 

Laelia

Senior Member
Messages
243
Location
UK
But at a journal club session in a university hospital department when a treatment is being discussed there is nearly always complete agreement on what is reliable evidence and what is not.

Yes but absence of reliable evidence for a treatment is not proof that a treatment is ineffective.

(Don't get me wrong people. I'm not trying to argue that Dr Myhill is not talking nonsense (I honestly have no idea if she is or isn't)! I'm simply arguing that there might not be enough evidence to say with any certainty that she is talking nonsense! I do hope that is clear. :))

There is no point in complaining about the bad science of PACE if it is suggested that CBT and GET should be replaced by treatments based on even worse science if any at all. We need a level playing field.

I agree! But it's the same question I have again. Has it been proven that Dr Myhill's work is "bad science" or is it just that we don't have enough reliable evidence to say either way?

Thank you so much @Jonathan Edwards for all your comments. I'm learning a lot from you as I'm sure others are too. I might not always agree with you but I'm very happy to be proven wrong! :)
 
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wdb

Senior Member
Messages
1,392
Location
London
Yes but absence of reliable evidence for a treatment is not proof that a treatment is ineffective.

Has it been proven that Dr Myhill's work is "bad science" or is it just that we don't have enough reliable evidence to say either way?

You seem really determined to keep shifting the burden of proof. Nobody can prove that Dr Myhill does not have effective treatments, it is unfalsifiable, just like you can not prove that the abominable snowman does not exits, you can not prove the world is not being run by lizzard people, you can not prove that I've not been visited by aliens. Not being able to prove something to be false is not evidence that something is true. Dr Myhill made a very clear unambiguous statement that is not supported by any reasonable standard of evidence, the burden of proof is on her to back up the claim, if she does not have the resources to back up the claim then she should not be making it.