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

[Laelia]

Please can we keep this thread on track - it is about Dr Myhill's campaign for a public enquiry, not the whys and why nots of clinical trials and anecdotal evidence.

You're right Andy, I had hoped this would only be a brief diversion but I'm now realising that this is a big topic on it's own.

I actually think this discussion is directly relevant to Dr MPhil's campaign. It is important that people can judge its usefulness and that will depend on a clear understanding of what constitutes reliable evidence. So I think laelia's questions are very pertinent.

You're right Jonathan. This understanding is necessary in order to judge the specifics of the campaign and what treatments it is promoting. However, it's not necessary to consider the broader question the title of this thread asks "Would you like a Public Inquiry into the Medical Abuse of ME Sufferers?". It is for that reason that I will set up a new thread to discuss what constitutes reliable evidence.

[Edit: New thread now set up here:
http://forums.phoenixrising.me/index.php?threads/what-constitutes-reliable-evidence.50725/]

Sometimes it is pointed out that physicians may not have the resources to do proper trials. The answer to that is that they should not then sell unproven treatments while writing books indicating that they are well founded.

I will revisit this point later on. I don't believe Jonathan that things are as clear cut as you think they are in terms of what is 'proven' and 'unproven'. So I would like to continue this discussion first.

 

[Laelia]

Sometimes it is pointed out that physicians may not have the resources to do proper trials. The answer to that is that they should not then sell unproven treatments while writing books indicating that they are well founded.

I said I wanted to revisit this point later on but on reflection I can respond to it now. I have come to the conclusion that Dr Myhill is indeed guilty of promoting treatments as well founded when they are not. However, in her defence, I don't think this is intentional. I believe that in her eyes, the treatments are well founded. I would also like to point out that she is very open about what evidence there is for the treatments she recommends, as detailed on her website.

There is much more to say about this but that's all I can manage for the time being.

[Edit: I wrote this when I was absolutely shattered. I really should avoid posting comments when I am in this condition. Now that I am more awake I am doubting the conclusion that I came to that Dr Myhill is guilty of promoting treatments as well founded when they are not. Apologies to Dr Myhill. This is complicated and I don't think I am ready to draw any conclusions on this yet].

 

[NelliePledge]

Going back to the original topic about mistreatment of ME/CFS patients and a public enquiry

Sorry if this is a dim question due to me only new to ME in last 18 months I just don't have the background info others have. Have the patients who have been badly affected by GET done/been supported to do formal complaints through the NHS procedure and have any gone to the NHS Ombudsman.

If there are multiple complaints on the same issue the Ombudsman will do a special report. Recently they have reported on standards of care for older people. The work of the Ombudsman is overseen by a Parliamentary Select Committee which holds hearings and writes reports that Govt Departments/NHS are expected to take notice of and can be called to give evidence of what action they have taken as a result.

Secondly there are of course the departmental Parliamentary Select Committees which also do investigations into topics of concern in the sphere covered by the department so Dept of Health and NHS under the Health Committee and they can call relevant people to appear before them to be questioned - people are expected to appear ( even big business names like "Sir" Philip Green and Mike Ashley have been unable to avoid appearing before Committees investigating pension issues and employment practices)

Thirdly there is the Public Accounts Committee oversight of effectiveness of public spending which is supported by the public sector audit activities of the National Audit Office. If the PAC hold hearings on a topic it is often headline news

I would think it is more likely to get some traction on one or more of these options than a Public Enquiry.

 

[Laelia]

I have now set up another thread:

http://forums.phoenixrising.me/index.php?threads/what-constitutes-reliable-evidence.50725/

 

[Murph]

A lot of talk about the medicine so far. Here's a political point:

The thing about public inquiries is that the chief inquirer matters a great deal. And you may not get the one you want.

In Australia, which also uses the Westminster system, we frequently run inquiries and royal commissions (a public inquiry with special powers) for political reasons.

One recent example is a public inquiry on trade unions set up by the major right wing party. The chief investigator was a well known anti-unionist, and this shaped the witnesses called, the treatment they received, the evidence collected, and of course the headlines published in the press..

Running a public inquiry in the UK, of all countries, seems to be a tremendous risk. The psychology brigade is flush with knighthoods and tenured positions, while we have a few bedridden souls, a couple of bespectacled men in Norwich and a push for an inquiry by a person whom The Sun might deride as a mad witch from Wales.

Assuming the MPs will take our side and appoint someone sympathetic seems, as Sir Humphrey might put it, an especially courageous decision. (Note that the Tories are in power and they love to believe that people make their own luck and anyone who fails in life deserves it.)

Be careful what you wish for!

 

[trishrhymes]

I agree with @Murph that a public inquiry may be counterproductive. My observation is that governments use them as a cynical way to kick into the long grass issues about which there is great public outcry. They are huge unwieldy beasts that can cost many millions and take years to complete, and when completed change little.

I can't see a snowball's chance in hell of getting one - ME is simply not seen as a big enough public issue.

Maybe using the request for an inquiry is effective in awareness raising with MPs, but I'd rather see the focus on changing the NICE guidelines and funding good research.

 

[helperofearth123]

Campaign MAIMEs is a drive for a Government Public Inquiry aimed at:

1. Achieving proper recognition that this is a physical illness so that patients can properly access benefits and appropriate treatments. The abuses of PWME must be reversed.

Is this targeted at GPs? So far all 4 GPs I've seen had no idea about CFS or anything they thought they knew about it came from the flawed Nice guidelines. It's a question of who is it we want recognition from? I would say that it is GPs and also whoever decides where to spend the research funding.

2. Rewriting NICE Guidelines using evidence based medicine that is logical, biologically plausible and with a proper scientific evidence base.

Fully agree.

3. Establishing that PWME should be treated by practitioners with specialised training in the physical causes of ME. These practitioners should include doctors, nutritional therapists and experienced patients.

As we have been debating, there is sadly no such thing as effective treatment for CFS at this stage. The whole point of this should be to simply educate those who need to know that it is physical. The purpose of this is to:

A: So that we don't suffer the indignity of GPs telling us we have a mental illness when its more like an autoimmune disease.
B: We can get the funding we need for real research into the biological causes and treatment.

Nothing else is needed, educate the GPs about the latest research and those higher up the ladder and get PACE removed.

There seems to be a lack of focus on educating those who are in charge of funding. There shouldn't be a single penny spent on any more psychological intervention techniques for CFS.

 

[Laelia]

As we have been debating, there is sadly no such thing as effective treatment for CFS at this stage.

Hello @Matthew Jones. It's possible that there are effective treatments for ME/CFS. The issue is that these treatments have not been subject to the types of rigourous trials required by the medical authorities to declare them effective. This does not mean however that we can conclude that the treatments do not work. In fact there is evidence to suggest that they might be effective. I know the that many people on here say that this evidence is unreliable but interpreting evidence is not straight forward and it's just possible that they might be wrong about this. People often get things wrong as I'm sure you know.

These are the sorts of details we are discussing over on this thread:

http://forums.phoenixrising.me/index.php?threads/what-constitutes-reliable-evidence.50725/

PS Nice guitar music by the way

 

[helperofearth123]

Hello @Matthew Jones. It's possible that there are effective treatments for ME/CFS. The issue is that these treatments have not been subject to the types of rigourous trials required by the medical authorities to declare them effective. This does not mean however that we can conclude that the treatments do not work. In fact there is evidence to suggest that they might be effective. I know the that many people on here say that this evidence is unreliable but interpreting evidence is not straight forward and it's just possible that they might be wrong about this. People often get things wrong as I'm sure you know.

These are the sorts of details we are discussing over on this thread:

http://forums.phoenixrising.me/index.php?threads/what-constitutes-reliable-evidence.50725/

PS Nice guitar music by the way

I suppose I can be a bit flexible and say that there could be treatments that work, but theres no way to tell which ones are working and which ones are the patent getting better by themselves or placebo. So i mean there could be patients out there getting better due to their treatment, but we would have no way of knowing if that is why, making it very difficult or impossible even to decide which treatment to pursue.

Thank you (for listening to my guitar music)

 

[mission impossible]

Jonathan edwards said:

"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,"

So why isn't NICE updating its recommendations on GET considering all the many many people who have become worse since doing GET many permanently?

 

[Laelia]

@Jonathan Edwards

Jonathan edwards said:

"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,"

So why isn't NICE updating its recommendations on GET considering all the many many people who have become worse since doing GET many permanently?

Very good question @mission impossible. I'm sure there are many people on here who would like to understand the answer to this question, me included!

(By the way @mission impossible it helps if you use the quote button on here when quoting people. That way the person you quoted is alerted to your quote and the rest of us can click on the link to find where the comment was made and the context in which it was made. Using this quote function is very simple, you just select the text you want to quote and then click on the reply button which pops up).

 

[Jonathan Edwards]

@Jonathan Edwards

'So why isn't NICE updating its recommendations on GET considering all the many many people who have become worse since doing GET many permanently?'

Very good question @mission impossible. I'm sure there are many people on here who would like to understand the answer to this question, me included!

I think we know that. The people who advise NICE on this are the same people with the same vested interests who did the PACE trial. And other doctors have the vested interest of getting patients they do not understand off their backs on off to the gym and psychotherapist.

 

[Chrisb]

Perhaps what UK sufferers need is for ME to be recognised as a third world illness.

http://www.bbc.co.uk/news/health-39590402

UK funding increased to fight neglected tropical diseases.

A slice of that £200 million might come in handy. One can only say that their lobbyists must be closer to the centre of government than ours. I suppose that all those large QUANGO salaries provided by the taxpayer give greater access.

 

[user9876]

"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,"

We shouldn't think of NICE as an organization with rational behavior. It is a collection of committees each of which has people on it with their own self interest. That is why certain treatments are being pushed and will continue to be pushed even though there are well documented adverse reactions in patient reports. They could listen to patients and take them seriously but it is not in their interest to do so.

 

[wdb]

Perhaps what UK sufferers need is for ME to be recognised as a third world illness.

http://www.bbc.co.uk/news/health-39590402

UK funding increased to fight neglected tropical diseases.

A slice of that £200 million might come in handy. One can only say that their lobbyists must be closer to the centre of government than ours. I suppose that all those large QUANGO salaries provided by the taxpayer give greater access.

I don't know how anyone can read that article and resent that money being spent, it's not one or the other, if that money hadn't have been allocated to tropical diseases it sure as hell wouldn't have gone to ME/CFS research.

They are spending over 3 years about what the NHS burns through in a single day to do this much:

International Development Secretary Priti Patel said the UK's support would protect more than 200 million people "from a future blighted by tropical disease".
"These diseases belong to the last century. They cause unimaginable suffering and pain to some of the world's poorest people, forcing them into a deeper cycle of poverty with no way out. Yet they are treatable.

 

[boolybooly]

I think we know that. The people who advise NICE on this are the same people with the same vested interests who did the PACE trial. And other doctors have the vested interest of getting patients they do not understand off their backs on off to the gym and psychotherapist.

And the vested interests deserve scrutiny in any inquiry along with the way they have influenced research and policy.

I get the impression its up there with the parliamentary lobbying and political capture which groups as diverse as OXFAM and 38 Degrees campaign actively about. Maybe groups like these would be natural allies.

I believe this would be the advantageous focus for any campaign seeking to start an inquiry, rather than which therapies work and which don't, that comes later after a reliable instrument for determining that has been established.

I completely agree with @Jonathan Edwards that any binding recommendation for therapy needs to be based on thoroughly scientific academic scrutiny, which is why PACE is such a scandal because it pretends to be something it isn't and I for one am very grateful he has thrown his weight behind demonstrating this.

At the same time I can also accept that there may be candidate therapies for particular conditions which arise through good clinical practice and safe exploratory experimentation which deserve proper assessment rather than being ignored.

So my conclusion from reading this discussion would be that any campaign like MAIMES should not be trying to promote any specific clinical alternatives which have not been properly evaluated and should focus on mounting a campaign to add political weight behind the discrediting of PACE, which can subsequently move on to ask why useful research into ME CFS type illnesses has been sidelined; as there seems to a structural deficiency in the way our national research effort responds to poorly recognised illnesses like those collected under the CFS umbrella, which are if you think about it exactly the kind of illnesses we should be looking at most carefully.

Does that seem fair?

 

[TiredSam]

I don't know how anyone can read that article and resent that money being spent

I must confess to letting myself down badly in that department. Anything, a news report on ebola, cancer charity adverts on ITV, will find me screaming at the television "WHAT ABOUT MY F***ING ILLNESS?".

I resent the matter-of-course attention that other illnesses get whilst mine is ignored. Of course I don't begrudge other illnesses their funding and I know they are suffering too and deserve all the help and attention they get. It's just that such reports and adverts are also a reminder of how shamefully neglected and abused we have been for 30 years.

In my defence all I can say is that in the privacy of my own living room I cause offence to nobody with my outbursts. Even my wife barely looks up from her kindle.

 

[Chrisb]

The concept of "opportunity cost" may not yet have reached the Metropolis.

 

[trishrhymes]

I'm glad that money is being spent on third world diseases. I'm also angry so little is spent on ME. The two don't contradict each other, especially as the one comes from the international aid budget, the other is down to the NHS and MRC. We are not directly competing for the same money.

 

[slysaint]

I'm glad that money is being spent on third world diseases. I'm also angry so little is spent on ME. The two don't contradict each other, especially as the one comes from the international aid budget, the other is down to the NHS and MRC. We are not directly competing for the same money.

I would be even happier if Wessely and his gang volunteered their expertise to help in leprosy colonies and the like...