N.B. Please sign the NICE Guidelines Committee petition – see below.
There was some encouraging feedback from the recent NICE ME/CFS Guidelines Stakeholder meeting, an early milestone in the long process of revising the guidelines. But was such encouragement justified? I wasn’t there myself, so I am grateful to those who attended on our behalf. Blogger and patient advocate Sally Burch reported that Guidelines Director Prof Mark Baker declared: “We’re going to tear it up and start again. We won’t allow it to look the same” while Prof Jonathan Edwards reported as follows (writing in the Science for ME forum):
“What intrigued me most was the elephant in the room – the reason why we were there at all, which was not mentioned once by the speakers from the floor and I suspect hardly at all even in the groups – the need to remove recommendations for CBT and GET. It nevertheless became clear that the NICE staff were absolutely clear that this was why we were there and that they had taken on board that this was not an issue for a few minority activists but essentially for all patients. At our table the facilitator said ‘I presume everyone here is agreed on that’ – despite the fact that a paediatrician and an occupational therapist were present who I suspect may not have realised this was why we were there and for whom these remained standard practice”.
All this talk of ‘tearing it up’ and scrapping CBT and GET was less in evidence however, in the letters which Prof Baker exchanged with Kathleen MCCall (who was representing the Trustees of Invest in ME). Writing in advance of the Stakeholder meeting, Prof Baker wrote: “I appreciate that the existing recommendations are a matter of concern to some patients and groups and we will give some consideration to whether we need to modify or omit any of the existing recommendations during the development of the new guideline”.
This does not exactly sound like ‘tearing up and starting again’ so when the feedback from the meeting emerged, Invest in ME wrote again to question the discrepancies. This time, Prof Baker’s response was of particular interest. He wrote:
“I did indeed say that we will fully replace the guideline and start again…. However, it does not mean that we reject everything that is in the current guideline.”
So this sounds like parts of the guidelines are to be torn up then reinstated, which is easy enough with a roll of sticky tape but a bit confusing for those trying to gauge the mood music at NICE. Prof Baker goes on to explain:
“The problem is, I believe, in the unthinking and ill-informed manner in which the recommendations are imposed on people for whom they are not intended and/or not suitable… I was struck by some of the stories at the workshop about the misuse of the current recommendations and the disturbing extent to which they are imposed on people who are unlikely to benefit from them and for whom alternative approaches would be sensible… The current wording makes clear that patient agreement is required but I imagine that consent is not usually sought and that patients are not considered to have rights to refuse (which they invariably do have in fact).”
So it seems that Prof Baker is at least convinced of the need to safeguard severely ill patients, who do indeed all too often have GET imposed upon them – in clear violation of the existing guidelines. This crucial change is to be encouraged, of course, as is the need for all patients to be informed they have the right to refuse treatment. How exactly this is to be achieved is another matter however. As “the current wording makes clear that patient agreement is required”, what do you do to ensure such agreement is sought? Perhaps the addition of the words “we really mean it this time” in bold print would do the trick. The wholesale removal of GET from the guidelines would be more effective, I suspect, but to judge by Prof Baker’s letter to Invest in ME, that doesn’t appear to be on offer.
He says: “scrapping the entire guideline now would be massively counter-productive as it would almost certainly result in the withdrawal of the already dwindling number of services available to people with ME. Therefore, a rather more limited approach would be required to protect what is good whilst modifying what may be harmful”.
So in spite of saying he wants to tear the whole thing up and start again, Prof Baker clearly believes that bits of it are good and need to be protected. I can’t avoid the growing suspicion that these bits might include CBT and GET. Indeed, if not CBT and GET then what? A large part of our problem is that when it comes down to what purports to be ‘evidence-based’, there isn’t anything else. Of course the ‘evidence’ for CBT and GET is extremely unconvincing, as David Tuller and others have illustrated time and again, and the reason there isn’t the evidence for anything else is that CBT and GET – and the misapprehension about the condition which their adoption has brought into being – have effectively put paid to biophysical research for many decades. This sad circumstance may give us the moral high ground – from the perspective of those who understand – but it doesn’t actually help.
As Jonathan Edwards puts it: “All in all it seems to me that something important has been achieved but there is still more work to do. NICE are very clear that the great majority of patients believe that CBT and GET are worse than useless. They realise that a committee must not be made up entirely of psychiatrists. However, when the committee comes to look at the evidence the only evidence for treatments working they will find will be on CBT and GET. It is going to be hard for them to not at least mention that there is supposed to be some evidence. Hopefully that will not be followed by a recommendation. However, I sense an attitude even amongst physicians and paediatricians that if CBT and GET are not available they will have nothing to offer. A lot of doctors find that uncomfortable. They should not but they do. So there will be a tendency for CBT and GET to remain in the guidelines even if watered down. That will depend to a degree on who is on the committee. That needs some thought. Applications are being taken in June and July.”
So yes indeed, the personnel on the committee will be of vital importance. Graham McPhee, John Peters, Sally Burch and numerous other patient advocates have written a letter to NICE requesting that the committee members are chosen with openness and integrity. They have also produced a petition which anyone can sign. Over 2,700 have done so already. If you haven’t signed yet, please consider joining them.
This is important. As Jonathan Edwards says, doctors feel uncomfortable if they have nothing to offer. This unfortunate fact is the reason why so many patients with physical illnesses over the years have been treated as though they have a mental health issue. It probably won’t help the patient but it’s better for the doctor than feeling powerless.
Sad to say, CBT and GET may remain in the guidelines for this reason, if for no other. They haven’t been torn up yet. We can’t even be sure that Prof Baker’s proposed amendments to avoid the inappropriate imposition of these ‘treatments’ will be acted upon, as he is due to retire before the new guidelines are finalised.
It is good that many patient advocates attending the meeting left with a good feeling about it but, as I am sure they realise, the battle is far from over yet. As a starter, we need the right people on the guidelines committee. Don’t forget to sign that petition…
Update: Apologies for my previous PS about the Royal College of Physicians (which I’ve now removed). It turns out I was quoting the wrong Royal College from the table. I hate to spread misinformation so many thanks to Annie who left a comment to set me straight. Nevertheless, as she points out, there is no reason for undue confidence in the RCP who are to take a leading role in the guidelines revision. Annie writes as follows:
“Excellent summary of where things stand so far with the review of the NICE guidelines.
“One point though the worrying comment you cite from the stakeholders comments during last summer’s consultation exercise was made by the Royal College of GP’s, not the Royal College of Physicians if I am reading the table correctly on page 89? Nonetheless, the Royal College of Physicians said they endorsed the comments of the Royal College of Psychiatrists and the neurologists whose submissions were poor and inaccurate and did not want the guidelines updated, so I am still not filled with confidence having the Royal College of Physicians so heavily involved.”
spoonseekerdotcom 
Excellent summary of where things stand so far with the review of the NICE guidelines.
One point though the worrying comment you cite from the stakeholders comments during last summer’s consultation exercise was made by the Royal College of GP’s, not the Royal College of Physicians if I am reading the table correctly on page 89? Nonetheless, the Royal College of Physicians said they endorsed the comments of the Royal College of Psychiatrists and the neurologists whose submissions were poor and inaccurate and did not want the guidelines updated, so I am still not filled with confidence having the Royal College of Physicians so heavily involved.
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Apologies for this, Annie. Thanks for setting me straight. I have now updated the post.
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No problem. Glad I hadn’t misread it.
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Tell all those medical professionals, as Jen Brea stated ” I don’t know is a beautiful thing”. And then put their efforts into learning about the condition and assisting patients to the best of their ability.
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Thank you spoonseeker for this sad but, I feel, all too accurate portrayal of the current situation.
As a sufferer of ME for nearly 30 years, harmed by the lack of diagnosis of a physical illness for twenty years due to the psychosocial models stranglehold on my physical condition, and denied an appropriate treatment because of the insidious influence of the flawed and potentially fraudulent PACE trial, all of which leading me to slip from mild to now severe, lose my ability to work or socialise and consequently lose contact with many of my friends and family . . . .
My message to Mark Baker, Johnathan Edwards, Sally Burch and all other attendees of the Stakeholder meeting . . . .
IF YOU ARE NOT ADVOCATING FOR THE TOTAL REMOVAL OF GET AND CBT FROM THE NICE GUIDELINES, THEN YOU DO NOT SPEAK FOR ME!
My message to all GPs and medical professionals that have any involvement in treating or attempting to treat ME patients . . . .
I WOULD FAR RATHER HAVE NO TREATMENT AT ALL ON OFFER FOR M.E. THAN HAVE ANY THAT ARE AT BEST STATISTICALLY INEFFECTIVE, AT WORST DEVASTATINGLY HARMFUL.
A heartfelt message to all involved . . .
PLEASE, PLEASE, PLEASE . . .
REMOVE GET AND CBT FROM THE GUIDELINES FOR M.E.,
REMOVE THE PACE TRIAL FROM CONSIDERATION FOR THE GUIDELINES AS IT HAS ALREADY BEEN PROVED TO BE FULL OF SERIOUS FLAWS,
USE THE EXISTING COLLECTION OF OVER 9,000 PIECES OF INTERNATIONAL RESEARCH DETAILING THE BIOMEDICAL NATURE OF THE CONDITION AS YOUR ‘EVIDENCE BASE’ (whilst bearing in mind that there is zero evidence for a causational or primary psychological involvement in M.E.),
GIVE DOCTORS THE FREEDOM TO CONTINUALLY INVESTIGATE PATIENT SYMPTOMS WITH MORE IN DEPTH TESTS THAN CURRENTLY ALLOWED,
PUSH FOR MORE RESEARCH INTO BIOMEDICAL CAUSES OF M.E.AND ANY POSSIBLE RESULTANT TREATMENTS BASED ON THAT RESEARCH,
REMOVE ALL M.E. OR CFS CLINICS BASED ON THE ERRONEOUS AND MISLEADING SYMPTOMS OF FATIGUE AND/OR FALSE ILLNESS BELIEFS,
SET UP M.E. CLINICS BASED ON M.E. FOR WHAT IT IS, A MULTI-SYSTEMIC PHYSICAL ILLNESS.
I realise that not all of the above is in the remit of NICE, but NICE can do some of the above and thereby lay the groundwork for the rest to follow.
Thank you.
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Many thanks for your comment , Margaret. I’m very sorry that like so many of us (my wife Chris and I included) you have deteriorated during all those years of neglect. I think Chris has left a message elsewhere suggesting you should share your experience of the harm PACE and the bps approach have done to you in support of Dr Myhill’s complaint to the BMA about the trial. I hope you are able to do that. We need to get the truth out there. Details in my previous post: https://spoonseeker.com/2018/01/17/have-you-been-harmed-by -pace
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Thank you for this excellent summary. I find it profoundly dispiriting how much “minority patient activists” are scorned and dismissed. Patient advocates who are critical of the profound, usually sexist abuses that the medical field has heaped upon us deserve our eternal gratitude. I know I am grateful for them. The idea that they deserve scorn relies on even more sexism – that such activists are unthinking, reactive, ungrateful b****es who don’t know what is good for them. (Mentally aberrant children who need toe strong paternalistic hand of the always-caring physician!) As opposed to, say, the facts – that the medical field has lied, manipulated data, stolen money earmarked for this disease, treated thousands without true informed consent, and continued in the long, sexist tradition of saying that a difficult-to-diagnose illnesses (that mostly affects women) is a mental illness. Even saying “minority patient activists” is adversarial and dismissive. We have a long way to go, and it is up to these physicians to take the first steps toward rapprochement.
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What is within the remit of NICE is to abide by the International Classification of Diseases mandated for use throughout the NHS.
What possible use is a Guideline for the unclassified, undefined mishmash of a disease invented by the Guideline Development Group for the current CG53?
Myalgic encephalomyelitis has been classified since 1969 at G93.3 (diseases of the nervous system). It has not and never has had an F (mental illness) classification. The presence of psychiatrists on a GDG for a neuroimmune disease is wholly inappropriate.
NICE could also save a lot of work and satisfy a lot of patients by adopting the International Consensus Criteria and the International Consensus Primer.
International Consensus Criteria:
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract
“Our panel strongly recommends that only the name ‘myalgic encephalomyelitis’ be used to identify patients meeting the ICC because a distinctive disease entity should have one name. Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.
They add:
“Not only is it common sense to extricate ME patients from the assortment of conditions assembled under the CFS umbrella, it is compliant with the WHO classification rule that a disease cannot be classified under more than one rubric.”
International Consensus Primer:
Click to access 2012_ICC%20primer.pdf
“Problem
Overly inclusive criteria have created misperceptions, fostered cynicism and have had a major negative impact on how ME is viewed by the medical community, patients, their families, as well as the general public
“Solution
The ICP (International Consensus Primer) was written to provide clinicians with a one-stop, user-friendly reference for ME.
“The ICP specifically targets primary care clinicians as well as specialists in internal medicine.”
Why re-invent the wheel, especially when it would be impossible for NICE to appoint a GDG with the accumulated knowledge and experience of the ICC and ICP authors?
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But it’s not true that there’s nothing to offer. Sure, there’s no evidence-based treatment specifically for ME, but there are lots of things doctors can do to help.
1) Chart debility and symptoms. It may not seem like much but establishing an accurate history (and not watered down because it seems unusual or is not in the textbook or whatever) is actually valuable for various reasons. If patients agree, publish some case histories and get more information into the literature.
2) Ensure practical needs are met with assistive devices, assistive technology, home care (medical, allied health, hygiene, help with cooking and household chores, whatever is needed), nutritional assistance where needed, and so on.
3) Treat symptoms. Many common symptoms such as difficulty sleeping, pain, and so on have available treatments.
4) Investigate and treat comorbid conditions and complications, such as migraine, dysautonomia, infections, pituitary conditions, thyroid conditions, collagen disorders, asthma, sinus problems, and so forth. Be alert for cancer and heart conditions. Watch for metabolic acidosis, vitamin deficiencies, and electrolyte imbalances.
5) In everything, acknowledge the patient’s agency: explain the benefits and risks, explain what is understood and what is not yet known, and allow the patient to direct their care.
See? Not that hard to write a “do something helpful” clinical guideline while avoiding GET, therapist-enforced denial, or even any poorly-tested medical intervention for ME.
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Thanks, Janelle. Your thoughts echo those of Dr Nigel Speight, I think. (See below.) I guess this approach could be described as ‘treatment with common sense’. Unfortunately this seems to have gone out of fashion in the NHS since the onset of the NICE guidelines, which seem to be treated more like a straitjacket than the helpful guidance which was intended.
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I’m sick & tired of this disease not being taken seriously I have CFSME fibromyalgia POTS and other problems, people are dying because of medical ignorance. Train Drs to specialise in it, give us some hope & some quality of life back.
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As a doctor, can I comment on the problem of doctors feeling inadequate when they have no curative treatment to offer
Firstly, there are many other conditions in medicine where this is the case but doctors do not abuse and reject these patients, but continue their Hippocratic duty to care and support. It is only ME that seems to make doctors feel empowered to act in this way
Secondly, there is much that doctors can do for ME patients anyway.
I suggest they provide Sympathy, Support and (in the case of children) Protection.
There is also quite a role for symptomatic treatment, for pain, insomnia etc
In the case of children, liaison with school can be important, and in both children and adults support for benefits can be vital
Finally, actual advice is also of importance (as opposed to attempts to “eradicate negative thoughts” via CBT) In acute onset early ME following a virus infection, early diagnosis is important as it can lead to vital advice not to push one’s child (or oneself) back to school/work too soon
So really there is no justification for doctors to reject ME patients
I can reassure doctors who feel helpless and feel like avoiding patients with ME that if all the above steps are followed they are among the most grateful group of patients one can have
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Thanks so much for this comment, Dr Speight. It is so true. As I mentioned to Janelle above (who left a comment along similar lines), it could be described as ‘treatment with common sense’. This used to be the first resort of doctors, but since the onset of the NICE Guidelines, they seem reluctant to attempt anything the guidelines don’t specifically mention. They have been encouraged to ‘paint by numbers’ rather than trust their own expertise.
Unfortunately I’m not sure that patients with other conditions would agree that they are never abused or rejected. I shall ask Pollly Moyer, an advocate for patients with rare diseases, what she thinks about that.
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Thanks again for your comment, Dr Speight. I have a couple more responses.
1) I quoted your remarks about what doctors can do for people with ME in a tweet and it proved very popular: 150 ‘likes’ so far and still rising, a much bigger response than I normally get with my relatively modest following. It certainly resonated with patients, including this one…
2) As for the attitude of doctors to patients with other ‘problem’ illnesses, I suspected that Polly Moyer would have a response to your comment on this issue and so it proved – but she’s had technical difficulties with WordPress so I’m posting it here on her behalf (touch wood). The rest of this comment is written by Polly:
Thank you for your sensitive comments and excellent suggestions, Dr Speight – and for all you do for people with ME. Unfortunately there are many conditions that seem to empower doctors to treat patients in a way that doesn’t feel compatible with the Hippocratic oath, as many people living with a rare condition know. I follow the ME story closely because it mirrors the experiences of people who are ‘living rare’, not least because the barriers to diagnoses with a rare condition include patients not being believed and/or being told that their symptoms are ‘psychological’. (RDUK report, 2016) Many patients with rare conditions pick up ‘MUS’/‘functional’ labels before they get a rational diagnosis and may be on the receiving end of all sorts of abuse from doctors, as a result. Even with a diagnosis it can be hard to find doctors who are willing to say ‘I don’t know about this condition – but I want to learn.’
I am now in the fortunate position of having a gem of a GP and an excellent neurologist, both of whom take this approach and are frustrated that there isn’t more they can do for me. I’ve learnt that part of my role as a patient is to let them know that it’s OK that they can’t treat, cure or reassure me. When I said this to my neurologist, her relief was palpable.
However the rare condition I co-exist with (mal de debarquement syndrome) is, broadly, viewed as a balance condition and there are many reports from patients with similar conditions being on the receiving end of poor treatment from medical professionals. For example, two women in the UK (who were later diagnosed with Meniere’s Disease) report being told ‘We see a lot of bored housewives – I think you’re one of them’. Charming, eh?? Meanwhile (like people deemed to have ‘MUS’), ‘dizzy’ people are often viewed as ‘heart-sink’ patients; we pick up on this and it can put us off seeking the kind of support you suggest even when we need it most.
So there is still a way to go before these patients don’t feel rejected by their doctors. But when we do experience great care – whether we’re living rare or not – we are, indeed, a very grateful cohort of patients and do all we can to promote good practice (https://doi.org/10.1136/bmj.i2042). My hope is that all patients will encounter doctors who follow your suggestions and understand how important their role is in our lives.
Many thanks again, Polly
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My opinion, for what it’s worth. NICE are clearly gearing up to continue recommending CBT/GET for moderately affected “CFS/ME” patients in a CG53 redux. So are their ‘evidence’ assemblers – see for example:
http://www.ncbi.nlm.nih.gov/pubmed/28444695
Until patients, stakeholders and charities DEMAND that NICE stick to WHO ICD-10-G93.3 disease taxonomy we haven’t a leg to stand on – as indicated by the ICC:
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/pdf
Note, the 2007 NICE CG53 did not rely upon the PACE Trial as PACE was not pulished until 2011. The pro-CBT/GET ‘evidence’ that NICE relied upon to produce CG53 was as flawed in its patient selction criteria and methodology as the composition of the Guideline Development Group was skewed towards psychiatry. I cannot emphasise this enough, read ICC author and NHS specialist Dr Terry Mitchell’s statement, produced for the 2009 High Court Judicial Review. It is shocking in describing the way the evidence base was manipulated for CG53 – as it no doubt will be for NICE’s pending upgrade:
Click to access Terry_Mitchell_WS.pdf
The ONLY way stakeholders have a chance of preventing NICE from inflicting CBT/GET upon real ME patients again is to stick to WHO disease taxonomy AND to relentlessly point out that it’s not just the PACE study that had unscientific methodology fraudulent patient selection criteria, ALL pro-CBT/GET studies are flawed in this manner.
As Dr Neil Abbot stated in 2009, better for NICE to recommend NO treatment, than to recommend scientifically questionable behavioural interventions:
Click to access Neil_Abbot_MERUK_WS.pdf
If patients and carers trust NICE to play fair this time around they are in for a big disappoinment.
Regards,
Anglia ME Action.
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Sad to say it, Anglia ME Action but I believe you are spot on with your thoughts & analysis of how this NICE review will pan out. Why there is so much rejoicing amongst ME patients & charity reps beats me. Duplicity has been the hallmark of all things ME related where there is involvement of the UK establishment why should things be so different now…..people need to take off their rose tinted spectacles….
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Completely agree with what Nigel Speight has said. I got ill in 1980. During most of the 1980s my condition was called ME ( NOT the stupid catch all of CFS) & my doctors di d what they could to support me, help me & prescribed symptomatic treatments as required. It was only at the end of the 1980s with the advent of Simon Wessley & his introduction of the term CFS & all the subsequent bps rubbish including the establishment of the bps CFS/ME clinics that followed his doctrine that things started to get worse for ME patients. The NICE guidelines made things worse & so did PACE. Compassion, common sense & doctors thinking for themselves seems to have disappeared ( with doubtless a few rare exceptions). The 1980s didn’t seem good but things have got a whole lot worse since then.
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Agree with all the above, and would like to note that it is being rather naïve or even ‘economical with the truth’ to say that patients are at liberty to decline offers of CBT/GET (or any other treatment). In reality, you are being made an offer you *can’t* refuse, whether this is theoretically allowed or not.
The least that will happen is that your notes will be marked that you are uncooperative and ‘refused’ treatment. [Whilst on this, I should note that another favourite patient dissing habit is to say that you ‘deny’ having such and such a symptom, rather than that you don’t have it: anything to make the patient look bad.]. By this simple method, every NHS person you meet thereafter is likely to be wary of you, or even downright prejudiced against you, and you will go to the back of the queue for everything you ask for, and any time you turn up at A&E.
Furthermore, even if you say you will go along with the treatment even though you do not hold out much hope that it is of any use, you can then be listed as ‘treatment resistant’, by which ploy the ‘therapists’ and their ‘treatment’ are absolved of responsibility when you fail to improve.
The patient really cannot win, any more than they could going up against the Mafia: You cannot refuse. (Recently, I tried to endure yet another gastroscopy without anaesthetic. I’ve managed this several times before, but this time I could not stop my stomach flinching against the scope in a way that was likely to be doing damage, so I had to signal them to stop. This was logged as a refusal, despite me having been told to do this if there was a problem, at the start of the procedure.)
In the worst case scenario–if your reputation is particularly bad, from trying too hard to get help to get better–any hint of a ‘refusal’ can be used as a pretext for having you sectioned in order to make you take the ‘treatment’. This actually happened to me even though I had previously organised, on my own instigation, CBT with a Kings’ therapist, but my local PCT had refused to fund it! I had also organised a bed at the then Queens, Romford, inpatient unit, but the PCT had refused to fund that either. After over three years wasted in the local psychiatric services, I was thrown out (though I knew I was too ill), with the advice that I should try the unit at Romford–which had closed down two years before, for lack of patients, due to PCTs not referring out of area! You could not make this stuff up.
So: while, in the ideal world, patients may, without prejudice, exercise a right to refuse, in *this* world. they will be scapegoated for life, and, quite possibly, even worse.
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