Petition: Opposing MEGA

[lilpink]

(particularly those like intolerance to various drugs that rarely seem to get a mention)

Yes..surely this is a classic 'marker' of authentic ME. You're quite right , it seldom gets a mention but it has resulted in very severe harm to me over the years.

 

[Jonathan Edwards]

I hardly think that GPs can be unaware of the PACE trial and/or the psychosocial campaign with respect to ME/CFS given that it is the same argument and rhetoric that is being promulgated for all 'MUS' conditions to GPs across the country. GPs are currently being actively encouraged and enticed to attend MUS training days and courses in preparation for them receiving psychotherapists to work in or with their surgeries, with the purpose of ensuring that their MUS patients (including ME/CFS sufferers) no longer 'waste' NHS money by being referred to secondary care. All this carefully planned and executed by the Institute of Psychiatry and the 'Wessely School' (Trudie Chalder's PRINCE Trials underway at present is part of this political move). If CS isn't aware of this GP training and these plans maybe he's now too overloaded and too specialist to grasp the wider picture?

I am sure you are right that GPs get told about MUS. However, I know for a fact that most GPs and indeed most physicians who treat ME in the UK have no idea what the words 'PACE trial' refer to. They have simply never heard of it. When I gave a seminar to my UCH department, where several physicians specialise in chronic pain and CFS, a month ago neither senior nor junior colleagues knew what 'PACE' referred to. Charles is not ill informed on this.

 

[Sasha]

I am sure you are right that GPs get told about MUS. However, I know for a fact that most GPs and indeed most physicians who treat ME in the UK have no idea what the words 'PACE trial' refer to. They have simply never heard of it. When I gave a seminar to my UCH department, where several physicians specialise in chronic pain and CFS, a month ago neither senior nor junior colleagues knew what 'PACE' referred to. Charles is not ill informed on this.

Not even the ones who specialise in CFS?

 

[Jan]

Yes..surely this is a classic 'marker' of authentic ME. You're quite right , it seldom gets a mention but it has resulted in very severe harm to me over the years.

I cannot take SSRI's, I've tried twice, once for pain, once during a spell of depression. My body reacts quite violently, with uncontrollable shaking and tachycardia to the point of collapse. Neither can I take ACE inhibitors, which were prescribed to support my heart, (separate heart problem). They made me very unwell, the last one I tried also caused severe chest pain. This worries me as the day will come when I will need these heart meds. I manage a very small dose of beta blocker for now.

Strangely I took carbamazepine for a number of years for trigeminal neuralgia and eventually mananged to come off of it. Years later i tried this medication again, for controlling nerve pain, and found I was now completely unable to tolerate it, it caused very severe diarrhea.

Btw, I have a fail safe test for ME. Sit your subject in front of a screen and subject them to rapidly moving images, flashing lights, camera shake etc and see how long it takes before they vomit. I have to look away, if I was forced to watch I know I would vomit.

 

[Jonathan Edwards]

Thanks

I just checked with Dr Eliana Lacerda from the biobank who confirmed that while most cases came from GPs, some (non-severe) cases case from clinics including the Norfolk and Sulfolk ME/CFS service, the Department of Clinical immunology of the Royal Free Hospital and the CFS clinic from the Royal London Hospital of Integrated Medicine (RLHIM). Separately, the biobank have stated that severe cases were recruited via Greater London patient support groups.

I guess that illustrates just how hard it is to get a large population based sample - which is what we need.

Thanks for getting a response from Chris Ponting. And thanks to Chris for that. In an ideal world I sympathise with the points made. However, since I am trying to think this through as hard as I can I would like to raise some of potential difficulties. I am going to be very up front and that may feel uncomfortable for some although I suspect we are all aware of the reality.

For conditions like rheumatoid arthritis and multiple sclerosis there is about one person in 200/500 who has the disease. There is also something like one person in 200/500 (maybe more) who thinks they have the disease but does not. Telling them apart is not hard because there are objective diagnostic signs and tests. For ME/CFS there is no way to tell. Anyone who thinks they have ME is likely to read up on the symptoms and to think they have all of them.

When I talk to colleagues who look after people with ME/CFS many of them say that some patients obviously have an unexplained physical illness and some have 'other issues'. In ordinary parlance this second group are hypochondriacs, or people with inappropriate illness beliefs. Other colleagues who look after ME patients seem to assume that all patients have 'other issues'. Thus although they carefully avoid saying it they think that CFS or ME is hypochondria, even if it was triggered by a virus at some time. That is presumably why patients get sent for CBT. Such physicians will be more than happy sending hypochondriacs to MEGA because they will think that is the idea.

If we consider that we almost certainly have two groups of patients, the question is which one will be most regularly attending CFS outpatient clinics. I think the answer is group 2, because hypochondriacs like seeing doctors. So it may be that the psychiatrists are right - the people they see may be 80% hypochondriacs. Clearly it is not that simple but it is a major issue. What further worries me is that a large proportion of ME research in the past, and probably now, is done by people who do not understand, or underestimate, problems of selection bias.

So although I would agree that for something like RA or diabetes or MS a larger dirtier cohort may be OK, I do not think one can assume that for ME. I think there is a high chance of discovering genetic markers for hypochondria. And even for RA a large dirty cohort with a smaller clean cohort inside it must have some statistical disadvantage because relative risk indices will be blunted.

One might argue that one would do no better with a population based cohort. However, my instinct is that it would be significantly richer in people without inappropriate illness beliefs and at least it would reduce the risk of referral bias.

Even with RA it became clear to me that with large multi centre studies methodology goes to pot very rapidly if one is relying on an assortment of clinical colleagues. Blunting of results can be by 50%. In other diseases GWAS studies may be reasonably immune to the problems but in ME I don't think one can assume that.

 

[Jonathan Edwards]

Not even the ones who specialise in CFS?

Nope - somebody said 'oh was that the one with White and all that?'

 

[Yogi]

I am sure you are right that GPs get told about MUS. However, I know for a fact that most GPs and indeed most physicians who treat ME in the UK have no idea what the words 'PACE trial' refer to. They have simply never heard of it. When I gave a seminar to my UCH department, where several physicians specialise in chronic pain and CFS, a month ago neither senior nor junior colleagues knew what 'PACE' referred to. Charles is not ill informed on this.

I am actually shocked and very surprised at this. I can understand GPs not being aware. How on earth can specialists in CFS/ME not be aware of PACE trial. On what basis do the majority of CFS/ME specialists recommend CBT and GET then?

Specialists do years of training in medicine and presumably to be a specialist have to be acquainted with some of the major research in their field.

PACE is the largest CFS/ME trial in the world and CFS/ME specialists are not aware of it?

I completely believe what you are saying but could it be that these specialists are now so embarrassed by PACE that they claim they have not heard of it and distancing themselves from the all the past recommendations of CBT/GET.??

 

[Yogi]

And another support group opposing MEGA

https://twitter.com/i/web/status/791603512371191809

 

[Jonathan Edwards]

I am actually shocked and very surprised at this. I can understand GPs not being aware. How on earth can specialists in CFS/ME not be aware of PACE trial. On what basis do the majority of CFS/ME specialists recommend CBT and GET then?

Specialists do years of training in medicine and presumably to be a specialist have to be acquainted with some of the major research in their field.

PACE is the largest CFS/ME trial in the world and CFS/ME specialists are not aware of it?

I completely believe what you are saying but could it be that these specialists are now so embarrassed by PACE that they claim they have not heard of it and distancing themselves from the all the past recommendations of CBT/GET.??

No, they just had not heard of it - certainly not by name. CBT was well entrenched long before PACE. PACE changed nothing and physicians do not have time to read everything. They tend to read papers that say something new.

 

[Yogi]

No, they just had not heard of it - certainly not by name. CBT was well entrenched long before PACE. PACE changed nothing and physicians do not have time to read everything. They tend to read papers that say something new.

WOW! Thanks for your response.

My understanding of the history is that CBT/GET only started being widely recommended after the CMO Report of 2002 and the set up of specialist clinics. From the 1960s to the mid 1990s people with ME were left alone without any of the harmful CBT/GET nonsense and it can be traced to the change of name to CFS in the mid 1990s and the rise of Wessely, White and Sharpe from then on. The CMO recommended biomedical research into CFS/ME and White and Sharpe diverted all the funds in 2003 to the PACE trial. PACE was the definitive trial on this and was published around 8 years later. Before the widespread promotion of CBT/GET after 2002 in the NHS only insurers in the years before forced people with CFS/ME to do CBT/GET.

I wonder if Sharpe and White had any insurance COI's?

 

[BurnA]

I am actually shocked and very surprised at this. I can understand GPs not being aware. How on earth can specialists in CFS/ME not be aware of PACE trial. On what basis do the majority of CFS/ME specialists recommend CBT and GET then?

I am not all that shocked or surprised.

They recommend CBT and GET because of the NICE guidelines.
They probably read the newspaper too.

There is no real need for them to have heard of PACE. But whether they have or not isn't the main issue, the main issue is they are prescribing CBT and GET.

 

[Valentijn]

I wonder if Sharpe and White had any insurance COI's?

The three principle PACE investigators (White, Chalder, and Sharpe) all had conflicts of interest. As far as I know, only White's involves insurance. They declared their conflicts when publishing, but not when recruiting patients, which is a significant problem.

 

[lilpink]

I am sure you are right that GPs get told about MUS. However, I know for a fact that most GPs and indeed most physicians who treat ME in the UK have no idea what the words 'PACE trial' refer to. They have simply never heard of it. When I gave a seminar to my UCH department, where several physicians specialise in chronic pain and CFS, a month ago neither senior nor junior colleagues knew what 'PACE' referred to. Charles is not ill informed on this.

It may well be that some GPs have never heard of the PACE trial, however it is a sad indictment of ME advocacy and a complete failure with respect to past media opportunities if very few GPs have even heard of the PACE trial let alone the controversy and scandal surrounding the discrediting of the PACE trial. NB There are at least 250,000 ME/CFS patients in the UK (http://www.metrust.org.uk/about/) and in a population of almost 65 million that represents 1 in 260 patients or 6 or 7 patients per GP. Who, from all the ME charities, is out there teaching the GPs on our behalf and putting them in the picture of the harm that CBT and GET and following NICE guidelines can do, and how research has misled the medical community on this? Meanwhile the IoP continues to put out its CBT/GET treatment propaganda to GPs without any apparent effective opposition from the charities or from any medical professionals.

 

[Jo Best]

Thanks for explaining this so clearly @Jonathan Edwards.

I guess that illustrates just how hard it is to get a large population based sample - which is what we need.

Thanks for getting a response from Chris Ponting. And thanks to Chris for that. In an ideal world I sympathise with the points made. However, since I am trying to think this through as hard as I can I would like to raise some of potential difficulties. I am going to be very up front and that may feel uncomfortable for some although I suspect we are all aware of the reality.

For conditions like rheumatoid arthritis and multiple sclerosis there is about one person in 200/500 who has the disease. There is also something like one person in 200/500 (maybe more) who thinks they have the disease but does not. Telling them apart is not hard because there are objective diagnostic signs and tests. For ME/CFS there is no way to tell. Anyone who thinks they have ME is likely to read up on the symptoms and to think they have all of them.

When I talk to colleagues who look after people with ME/CFS many of them say that some patients obviously have an unexplained physical illness and some have 'other issues'. In ordinary parlance this second group are hypochondriacs, or people with inappropriate illness beliefs. Other colleagues who look after ME patients seem to assume that all patients have 'other issues'. Thus although they carefully avoid saying it they think that CFS or ME is hypochondria, even if it was triggered by a virus at some time. That is presumably why patients get sent for CBT. Such physicians will be more than happy sending hypochondriacs to MEGA because they will think that is the idea.

If we consider that we almost certainly have two groups of patients, the question is which one will be most regularly attending CFS outpatient clinics. I think the answer is group 2, because hypochondriacs like seeing doctors. So it may be that the psychiatrists are right - the people they see may be 80% hypochondriacs. Clearly it is not that simple but it is a major issue. What further worries me is that a large proportion of ME research in the past, and probably now, is done by people who do not understand, or underestimate, problems of selection bias.

So although I would agree that for something like RA or diabetes or MS a larger dirtier cohort may be OK, I do not think one can assume that for ME. I think there is a high chance of discovering genetic markers for hypochondria. And even for RA a large dirty cohort with a smaller clean cohort inside it must have some statistical disadvantage because relative risk indices will be blunted.

One might argue that one would do no better with a population based cohort. However, my instinct is that it would be significantly richer in people without inappropriate illness beliefs and at least it would reduce the risk of referral bias.

Even with RA it became clear to me that with large multi centre studies methodology goes to pot very rapidly if one is relying on an assortment of clinical colleagues. Blunting of results can be by 50%. In other diseases GWAS studies may be reasonably immune to the problems but in ME I don't think one can assume that.

 

[charles shepherd]

WOW! Thanks for your response.

My understanding of the history is that CBT/GET only started being widely recommended after the CMO Report of 2002 and the set up of specialist clinics. From the 1960s to the mid 1990s people with ME were left alone without any of the harmful CBT/GET nonsense and it can be traced to the change of name to CFS in the mid 1990s and the rise of Wessely, White and Sharpe from then on. The CMO recommended biomedical research into CFS/ME and White and Sharpe diverted all the funds in 2003 to the PACE trial. PACE was the definitive trial on this and was published around 8 years later. Before the widespread promotion of CBT/GET after 2002 in the NHS only insurers in the years before forced people with CFS/ME to do CBT/GET.

I wonder if Sharpe and White had any insurance COI's?

Brief history of CBT clinical trials from the MEA purple book:

7.6.4 Cognitive behaviour therapy
CBT is an aspect of management that causes considerable controversy – largely because of the various ways it is administered in the case of ME/CFS. At the one end of the spectrum, CBT is used – as it is with many other chronic medical conditions – to help people develop better ways of coping with symptoms such as fatigue, pain, or sleep disturbance, with a clear acceptance that these have a genuine physical basis. This type of approach may, therefore, be helpful to patients who are not managing their lifestyle adjustment in an appropriate manner or where there is depression or psychosocial distress complicating the clinical picture. At the other end of the spectrum, CBT is a therapy based on the idea that ME/CFS is essentially a psychological illness that may well be triggered by an infection but is then perpetuated by a vicious circle of abnormal illness beliefs and abnormal illness behaviour – both of which need to be addressed and challenged if recovery is going to occur. Not surprisingly, this is an approach that patients find both inappropriate and offensive.

A number of clinical trials involving the use of CBT, including the PACE trial, have shown that this approach can sometimes be of some help to some people with research-defined CFS (Deale et al 1997, 2001; Prins et al 2001; Sharpe et al 1996; Stulemeijer et al 2004). However, in other trials, CBT has produced little or no benefit overall (Friedberg and Krupp 1994; Huibers et al 2004; Lloyd et al 1993; O’Dowd et al 2006; Whitehead and Campion 2002) or has not benefitted a significant proportion of patients (Akagi et al 2001). CBT has also been reported to have an effect on heart-rate variability (Hansen et al 2013). For some people with ME/CFS who require this sort of help, straightforward counselling is an option that has been reported as being a cost-effective alternative to CBT (Ridsdale et al 2001).

In patient feedback obtained by The MEA and other ME/CFS charities for the Chief Medical Officer’s report, only 7% of patients found CBT to be “helpful”; 26% said it made their condition “worse”, and 67% reported “no change”. In the survey done for the MEA Management Report, 25.9% reported that CBT had “improved” or “greatly improved” their symptoms; 54.6% reported “no change”, and 19.5% reported that CBT had made their condition “slightly worse” or “much worse”.

 

[lilpink]

When I talk to colleagues who look after people with ME/CFS many of them say that some patients obviously have an unexplained physical illness and some have 'other issues'. In ordinary parlance this second group are hypochondriacs, or people with inappropriate illness beliefs. Other colleagues who look after ME patients seem to assume that all patients have 'other issues'. Thus although they carefully avoid saying it they think that CFS or ME is hypochondria, even if it was triggered by a virus at some time. That is presumably why patients get sent for CBT. Such physicians will be more than happy sending hypochondriacs to MEGA because they will think that is the idea.

I couldn't think of a better reason to vote OMEGA!!!

 

[Cheshire]

WOW! Thanks for your response.

My understanding of the history is that CBT/GET only started being widely recommended after the CMO Report of 2002 and the set up of specialist clinics. From the 1960s to the mid 1990s people with ME were left alone without any of the harmful CBT/GET nonsense and it can be traced to the change of name to CFS in the mid 1990s and the rise of Wessely, White and Sharpe from then on. The CMO recommended biomedical research into CFS/ME and White and Sharpe diverted all the funds in 2003 to the PACE trial. PACE was the definitive trial on this and was published around 8 years later. Before the widespread promotion of CBT/GET after 2002 in the NHS only insurers in the years before forced people with CFS/ME to do CBT/GET.

I wonder if Sharpe and White had any insurance COI's?

The example of France can be of interest, CBT is not very common, psychoanalysis is still very important (sigh) and massively taught in psychology curricula. So the cognitive model of CFS is not widespread, and mainly defended by rare MDs.
That doesn't prevent patients (with a label of CFS or not) to be sent to psychiatrists, because somatisation, hypocondria or whatever you can think of, is thought to be the cause of their symptoms.

The problem is not CBT per se, but the absence of a biomarker.

Edit: but the importance put on MUS in the UK may pressurise more GPs and others to attribute a psychological cause to misunderstood diseases than in other countries.

 

[charles shepherd]

It may well be that some GPs have never heard of the PACE trial, however it is a sad indictment of ME advocacy and a complete failure with respect to past media opportunities if very few GPs have even heard of the PACE trial let alone the controversy and scandal surrounding the discrediting of the PACE trial. NB There are at least 250,000 ME/CFS patients in the UK (http://www.metrust.org.uk/about/) and in a population of almost 65 million that represents 1 in 260 patients or 6 or 7 patients per GP. Who, from all the ME charities, is out there teaching the GPs on our behalf and putting them in the picture of the harm that CBT and GET and following NICE guidelines can do, and how research has misled the medical community on this? Meanwhile the IoP continues to put out its CBT/GET treatment propaganda to GPs without any apparent effective opposition from the charities or from any medical professionals.

GPs (and most other health professionals) do not take any notice of 'ME advocacy' when it comes to making up their minds about the cause or management of ME/CFS. Strong advocacy can, in fact, be counter-productive when they see it on the internet - as some do

The main sources of information upon which they form opinions (which then translates into clinical judgement) are what they have learnt at med school and in current or past clinical practice, medical journals, post-grad education, CPD learning modules, what their colleagues say about diseases, and what they read in newspapers, see on TV and hear on the BBC

Medical charities do exert some influence and the MEA produces quite a lot of literature that is aimed at both doctors and patients (e.g. our Early and Accurate Diagnosis material) and, in particular, the MEA purple book - which we send out free to any GP who wants a copy, or where a patient requests that a copy is sent

MEA purple book - 2016 edition:

http://www.meassociation.org.uk/shop/books/mecfspvfs-an-exploration-of-the-key-clinical-issues/

 

[Countrygirl]

I value @Jonathan Edwards input on the problems of MEGA's plan to source patients from the fatigue clinics.........apart from the fact that no one I know with ME would touch them with a barge pole. Thank you. It is useful information on which to craft the letter to Prof Holgate.

I also have one other very serious concern that I want to raise. (it involves our favourite lady consultant.)

EC is the resident alleged 'ME expert' of the MEGA team in addition to Prof White.

I think this raises a further serious problem.

We know that she informs parents that when their child becomes severely ill and bedridden that this is evidence that they do not have ME but a mental health condition: conversion disorder; PRS.............or should we now say PAWS? ( I love the new name..............Pervasive Arousal Withdrawal Syndrome .........a wonderful fresh meal ticket for the BPS crew.......... or whatever else is the flavour of the day).

She informs parents and staff that feeding tubes and becoming so severely unwell that the patient is bedbound are not the result of ME which, in her view, is a much milder condition...........tiredness from too many late nights perhaps or poor nutrition ? It is not evidence that parents should be denied legal rights over their child nor evidence that a very sick child should have to endure a punishing schedule of physiotherapy and their distress and subsequent deterioration ignored. There is a term for this.

Given that we know that this is her belief is this the information she has given to her colleagues......or will do.............on MEGA?

Would this discourage them from investigating the severely ill?

Of course it would.

I think it is important to ask Prof Holgate to reassure us that he and his colleagues (we know the 'experts' don't) know that the physical illness ME is severe and accounts for patients becoming bedridden and requiring feeding tubes in some cases and this is not evidence that they have a mental health condition.

If they cannot subscribe to this, then I do not see how we can support the trial.

It is also important to know who will succeed Prof Holgate when he retires. Would it be his deputy? I suspect that is more than likely and again unacceptable.

 

[Wildcat]

.
1997 - CBT consisted of "We won't get anywhere all the time you think what is wrong with you is physical".
I hadn't actually even expressed a view at that point ... mainly because I was virtually unconscious and falling off the chair.

Too sick to attend more than one GET appointment.

1999-2000 ... perpetually harangued by GP who was actually obsessed with GET ... "Graded exercise is a PROVEN Treatment! Why won't you do it!".

I now avoid doctors.
.