Stonebird Review of Dialogues from a Neglected Illness

With a wealth of moving and harrowing material, this series of Videos informs, illuminates and manages to convey something of what the most severe ME patient is going through. As Stonebird provides information and raises issues pertinent to Very Severe ME, that is what this review will focus on.

On a practical note there were problems opening the videos on the website, one contributor’s voice was completely missing when played, repeatedly, so that content and important information was missing from the Management of Very Severe ME video; the film also froze repeatedly and would not continue at one point.
Some of the other films would not open at all or froze too. That could be very disruptive and off putting, especially to anyone with visual and cognitive disability or with depleted levels of energy. We do not know how widespread this issue is or why, but it did make it hard to watch and review the material.
We also found that some of the written material was not displayed long enough on the screen to read, process and understand, particularly those with long lists and sentences, making it potentially very difficult for people with severe cognitive issues to follow or take in quickly enough. The font was difficult to read easily.
The film's titles combining both “Chronic Fatigue Syndrome “and “Myalgic Encephalomyelitis” are hugely disappointing. Neither phrase is explained as to its meaning or accuracy, particularly in context of the biopsychosocial expansion of the term to mean something quite different to the original Enteroviral Disease, coined by Ramsay.
Watching all three films together gives the most comprehensive overview, but for people who are severely ill that is a big ask. It is vitally important, however, that they know just what is being said about their illness, how it is being represented and what is being used to educate others on their behalf, particularly medical practitioners.
Each film will now be reviewed:

Severe and Very Severe ME/CFS (Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

We had a lot of difficulty getting this film to open, even after trying multiple times on different days.
A very good general overview, the film shows how ME impacts all levels of life and relationships.
It highlights just how devastating and life changing this illness is, the sudden change in life experience that ME brings, the sudden need for care to get even your basic needs met, alongside the many difficulties in accessing care support, benefits, medical recognition and appropriate long-term medical support both at GP, Consultant and Nursing level.
One is left with a comprehensive, though perhaps a too brief overview, of the range of severity, including the risk of death from ME or in some cases possibly due to undiagnosed Mast Cell Activation syndrome, as well as the tragic deaths from suicide, which too often result from medical mismanagement and the difficulties people have accessing services.
The post-mortem findings, that some may have Dorsal Root Ganglionitis underpinning their neurological symptoms, emphasises the extreme suffering which people with Severe/Very ME can endure, often not proven until their death.
It mentions some of the sensitivities experienced in Very Severe ME; light, noise touch, however describing stimulus sensitivity as an ‘unpleasant reaction’ is an understatement for the more severe sufferer.
It is good to see the film highlight how this illness lasts many years and decades.
The great importance of recognising Post-Exertional Malaise (PEN) is stressed, though the term Post Exertional Neuro-immune Exhaustion ( PENE) is not used, which is the more recent, preferred term.
It also raises awareness of the difference of ability within the severe category, how some may potter for an hour whereas for others the slightest exertion such as thinking of trying to read, will trigger PEM.
It shows how exertion does not necessarily need to be what would normally be described as exertion, yet can still have a deteriorative impact leading to a worsening of symptoms.
It describes how pain may be so extreme that being lifted may be intolerable and how the help needed is not always possible to access; the person may need to wait without the help they need. “ Like a rag doll”, is very descriptive.
It also raises the very real, frightening issue that carers may face, thinking the person has died, because the person they care for is so very severely ill, still, weak and may not appear to be breathing, becauae breath is so shallow.
It is very good in stressing how those patients at the more severe end of Severe ME are unique, very severely disabled and experience much suffering. Some may appear to be paralysed, which is emphasised, however others will actually be paralysed. Paralysis is much better dealt with in this film than the Managing Symptoms of very Severe ME film.
It recognises how frightening it is when the pain and paralysis creeps up the body and goes into the head and neck. Also it describes when eyes will not open and breathing is difficult.
The Very Severe experience is well described as a twilight existence between life and death.
It demonstrates how some sufferers may have to use a Naso-gastric tube. The film stresses the need for proper medical support and how GP’s need to take long term responsibility in supporting their patients.
It is good to see the difficulty in getting Consultant input recognised, due to the nature of the illness and the difficulties of being house or bed bound.
The difference in prognosis between children and young adults and older adults is addressed. The prognosis is not good for older adults, without significant improvement after five years. We welcome a realistic representation of prognosis.
It promotes the importance of ongoing GP input, which is still valuable, even without a cure, in order to keep an account of the symptom experience or to try new symptomatic relief that may arise. The need for input is long term, both for younger patients and for adults. “House bound”, “bed bound”, “wheel chair bound” are helpful descriptions of the reality of Severe ME.
Overall this film gives a very good overview of the seriousness of the illness, its impact on every aspect of living and its long-term nature.
However the printed poor descriptive criteria of Severe and Very Severe ME downplays the category “Very Severe ME”, almost by default. This reflects the wider problem of poor diagnostic and descriptive criteria that are found with ME.
The quoted information presented, fails to make a clear enough separation between the categories of “Severe” and “Very Severe” ME. Nowhere either, does the film mention that only about 2% of people, according to the MEA, will have Very Severe ME. (Flemming 2017). Surely an essential fact to raise?
The descriptive criteria used are far too limited to adequately show the full range or the true severity of symptoms, which individually in themselves can be extreme and present in Very Severe ME; which may not necessarily be about being bed-bound, for some may be intolerably worse lying down. They understate the range of hypersensitivities and other symptoms that can completely incapacitate and isolate or alienate and utterly disable a person long term.
It is unclear whether the term Very Severely affected, in the written definition, pertains to a specific category, Very Severe ME or is recognising that there is a range of symptom severity within the Severe ME category. We would have imagined that light and sound sensitivity might be found more broadly across the Severe ME spectrum, to varying degrees, yet be utterly torturing and of an entirely different level of experience for those in the Very Severe ME category and have profound consequences in Very Severe ME which is even more extreme than Severe ME, the depth of suffering being unimaginable until experienced.
It is unclear if Very Severe ME is actually being represented as a phase rather than a long term reality and category?
Very Severe ME is a tortured, extreme existence, where nothing is possible and every single interaction is deteriorative and intolerable.
It is very important that people recognise that there is a huge difference between ‘Severe ME’ (the 25%), where there may be a range of severe to very severely affected patients and ‘Very Severe ME’ (the 2%), where it feels like death is imminent and life unsustainable in the sheer intensity of suffering. The distinction is not emphasised enough in the film.
The suffering of Very Severe ME which is truly off the scale, is well represented by some of the film’s video material. "Severe ME” and “Very Severe ME”, however really do need to be clarified better as two distinct categories, otherwise there is a danger of giving the misleading impression that very severe ME is just a phase people pass through, rather than it being a long term reality for some.

Symptom Management of Very Severe ME/CFS

We welcome that so many of the symptoms of those suffering from the most severe forms of ME are acknowledged and recognised, particularly by the leading ME physicians, interviewed.
The extreme body pain that can be untreatable, the cognitive issues, the hypersensitivities which generally seem to be ignored or down played or not adequately recognised by professionals and families, the Post- Exertional Deterioration, the relentless severe constant, utterly disabling headaches and abdominal pain/food sensitivities and sleep disorders are all discussed.
We very much hope that this film will challenge professional’s practice, attitudes and beliefs about people with Very Severe ME, who are hidden out of view and who are suffering unimaginably with little recognition or helpful input.
In particular it is refreshing to see the less well understood hypersensitivities and the devastating impact of hyper-stimulation being described by people who have personal experience of them or by those who have witnessed the experience of them.
It can cause extreme anguish to be in the presence of someone so tormented. Touch sensitivity, pressure sensitivity, movement sensitivity, smell sensitivity, extreme light sensitivity and sound sensitivity, medication and food sensitivity, can create massive difficulties in getting even the simplest care needs met.
It is excellent how the film highlights how even the act of thinking or reading can deteriorate folks with Very Severe ME.
It is particularly validating, though painful, to hear how the different symptoms impact the person and influence the need for total care and support.
It is particularly welcome to see a focus on the extreme pain and headache that is experienced without relent. The sound of rustling causing pain, the difficulty turning over in bed or accessing the toilet, the impact of someone just sitting in a room breathing are highlighted.
It is so necessary not to clinicalise these words and detach them from the terrible reality that the person experiences moment by moment in unending suffering. This is surely conveyed by Jane Collingridge’s description of what Emily went through, literally screaming with the pain from any contact and at the same time not feeling her legs. Her account defies anyone not to engage with some level of the tormented reality of the Very Severe ME sufferer.
The presentation on sleep dysfunction is valuable, highlighting the importance of respecting the sleep pattern, rather than trying to impose a sleep hygiene regime which could be damaging.
It is also welcome to see the difference between body pain, abdominal pain and additional complications recognised, with the possibility of Mast Cell involvement and Histamine in food intolerance raised, alongside the hope that there is a potential, specific treatment, Oral Chromoglycate. Also the representation of the positive affects of naso-gastic tube feeding are highlighted, supportive and helpful.
It is heartening to see Myoclonic Jerks recognised as a very severe symptom by a medical consultant.
The film stresses the importance of listening to the patient and respecting/ believing them, not enforcing a doctor’s idea of their expected pace, which can be highly damaging. This is so important.
The importance of believing and accepting the patient is emphasised. Validation, empathy and trust are required in order to provide supportive care. We cannot agree more that trust is essential; in our own experience that needs to be earned, not freely given, as great harm can ensue from misinterpretation, ignorance of the appropriate and safe way to approach and communicate with someone and of course wrong treatment protocols. Accountability is also essential.
What is disappointing is how the extreme suffering and the very severe symptoms that can be experienced at various stages of the disease and for varying lengths of time, even though extremely harrowing and illuminating, are described by people who appear to have made some level of recovery.
While this is encouraging, affirming and must be a massive relief for them, it would also have been incredibly valuable to hear from long term sufferers with a Very Severe Diagnosis, who have not recovered or improved, conveying their pain and symptoms first hand; not just a few still photos. Because of the extreme nature of the symptoms themselves and the great difficulties in recording, we do appreciate, of course, how incredibly hard this might be to do in practice.
We also appreciate the sensitive way that death with ME is represented: some people with Very Severe ME die and others take their own lives, not out of depression, but for other reasons associated with the way the disease is treated and misinterpreted. This is an important distinction to make.
One point to note, though, although we totally agree with the need for consistent regular, same GP input and particularly, appropriate specialist input, in practice it is hard to know who is safe to trust.
This is especially so in a health service that promotes and provides a biopsychosocial approach to ME, that does not recognise adequately the full range of symptoms and validates a psychosocial approach that denies underlying pathology and symptom experience. This could have been overtly highlighted more, as it underpins the reason why more progress has not been made in developing a biomedical consistent pathway.
A home visit, then, carries the very real risk of mistreatment or misinterpretation.
The film does not seem to acknowledge how biomedical ME Consultants are like gold dust. It is impossibly hard to know who it is safe to trust and damage can be long lasting if the Clinician gets it wrong.
Another concern is the promotion of very strong drugs, including Anti-Depressants, for without knowing the underlying pathology of the disease, it cannot be certain what is safe to try or what dose, if any, is safe, though the film does advise starting on a low dose.
We have learned to approach any drug treatment with great caution. Not all drugs are suitable or safe, especially as the diagnostic term “ME/CFS”covers a range of conditions and is too vague to be disease specific.
People with Very Severe ME are incredibly vulnerable. The consequences can be devastating, especially when professionals walk away, blaming you or do not take responsibility, leaving you to cope in indescribable deterioration for years and years.
We would very much have liked to have seen an emphasis on Risk Assessment, Accountability and Clinical Responsibility in the film.
Although drug sensitivity is mentioned in the written material, it can easily be missed. The writing is small and the frame change speed may be still too fast for very slow readers with severe cognitive issues.
The film appears to seek to encourage us that there is hope and possibility of alleviation of symptoms, although no cure. However it fails to raise enough awareness , we feel, of patient’s vulnerability to harm from wrong drug treatments, which we have personally experienced as triggering long term paralysis, for example.
The impact and danger of drug mistreatment can be devastating and have long term affect. Mistreatment of ME sadly does not just reside in the travesty of a CBT /GET approach.
It is good to see recognition of the need to manage the environment, in order to help improve or at least avert triggering deterioration, however it would have been helpful to expand this section for us to see how that can be achieved, as it is not always obvious or easy to know what to do for particular hypersensitivities, especially when symptoms first deteriorate to extreme expression and it is not always obvious what you can do to help protect a person.
What is most disappointing in the film, is its presentation of Paralysis in Very Severe ME, especially given the effort the film has made to recognise more fully some of the less well acknowledged symptoms of Very Severe ME and to promote the fundamental importance of validating the patient’s experience, it seems odd to appear to down-play paralysis, in the written material:
‘An inability to move- Extreme weakness
(Patient may refer to being paralysed)’
‘Extreme Weakness. May be unable to move in bed -almost ‘paralysed.’ May lose ability to speak or swallow.’
Though we appreciate that some people may feel extremely weak, others will experience actual paralysis.
Whether paralysis is due to ME or a comorbid condition or misdiagnosis may be unclear. Because of the way paralysis is overlooked and consistently downplayed in ME generally, the experience may be negated or misinterpreted wrongly as Functional Neurological Disorder (FND).
Why, we ask, is paralysis not better recognised as an actual symptom in the written material, rather than implying merely a description of weakness? Why is the term paralysis written in inverted commas?
It manages to negate, in our minds, the serious nature and the reality that some people are not just almost paralysed, as if it is not quite real paralysis, but actually paralysed for hours days, weeks, transiently, periodically or more permanently, partially or fully. This is documented by Leonard Jason in a recent research paper, where 29.4% of people described themselves as specifically experiencing paralysis as a symptom of PEM.
Yet in the film’s written material, the inverted commas could be taken to imply it is less than real. Also, why not mention the terms actual throat paralysis, as such or gastroparesis? These are so incredibly serious.
We appreciate that some people speak of paralysis in the film or describe what actually sounds like paralysis, not just extreme weakness.
Paralysis was recognised by the early pioneers such as Ramsay and Dowsett, especially given the association between enterovirus and Polio. Acheson, for example, stated in 1959: “broadly speaking, the epidemic cases have fallen into two groups: patients with definite localised muscular paresis, and those without.” (Acheson 1959).
However paralysis is generally no longer affirmed in current definitions or diagnostic criteria, leaving the paralysed patient open to denial or misinterpretation. Sadly, we feel, paralysis is not properly recognised here in the film, which could have done so much more to affirm this terrible symptom, which is experienced severely to profoundly in Very Severe ME, yet is almost completely clinically ignored.
Curiously the difficulty or inability to sit up in bed, is only attributed to Orthostatic Intolerance, in the written material. There are many reasons why someone may not be able to sit up in bed, including total or partial paralysis and the severity of specific symptoms themselves.
The website claims that Dialogues is a work in progress, it is hoped that the issues concerning the representation of paralysis might be addressed and the information better presented.

Hospital Admission

This is an excellent video highlighting the very real issues facing patients in getting appropriate, safe hospital and dental treatment.
It is extremely moving to hear how people have received right care as well as recognising and highlighting the dangers of deterioration, even death, from wrong attitude and approach.
We would have liked paralysis to have been included; the difficulty of caring for someone who is transiently or periodically or permanently paralysed is extremely vulnerable, especially if it is not recognised as such, which seems to be the case in ME.
We would also have like to see the how of caring mentioned, not just the environmental and practical needs, which obviously are essential.
It is really helpful, we feel, to highlight the possibility of accessing the support of a Palliative Care team, who will have understanding of the type and level of of care required.
This film was very moving to watch. It is uplifting to see the very real difference in approach that is possible but still not remotely present for most patients, sadly.

Conclusion

There is no specific reference, in this series of Videos, although there may be else where on the website, to the major reason why people are left in the state that we see in the films, misrepresented, misinterpreted, mistreated, neglected, with little or no understanding of the best and safest ways to interact and support them: the biopsychosocial context in which ME has been deliberately framed for decades.
The biopsychosocial model’s assumption and influence, that there is no underlying pathology in ME, that it is “all in your head” is a major factor in the institutional prejudice and stigmatisation that people with ME have suffered for decades.
Without specific reference to the deleterious influence of psychiatry on current health service provision, the film could leave the viewer with the impression that if one can get a home visiting service, then they would get the right support, which is far from certain, unfortunately. The fundamental beliefs of the practitioners that people are exposed to, particularly if the practitioner subscribes to a biopsychosocial point of view, are crucial to recognise. The affect of these attitudes and the treatment that goes alongside them is clearly evident in the video material.
There also appears to be a dearth of older people being represented visually, giving the false impression that this is primarily a disease of younger people, who can recover to a degree, if managed well. Without a cure, how many people have been left for decades, ageing, without adequate input, barely clinging on to life? This older group is not well represented.
It would have been extremely helpful to emphasise the need for a Risk Assessment before any intervention, for the most severely affected, alongside the fundamental principle to do no harm.
Pacing is mentioned in the Management of Symptoms Video, however, it could have been stressed how insidious “Pacing” is, as interpreted by the biospychosocial model. Rather than conserving energy, it is perversely attached to eliminating “unhelpful beliefs” and graded exercise or graded activity management; the worse possible intervention in ME.
In any case, pacing for the most severely ill is unrealistic and unachievable.
The website claims that Dialogues is a work in progress, it is hoped that these issues might be addressed, particularly regarding the definition, the risks of any intervention, no matter how well intended and specifically, the representation of paralysis and the written information overall better presented to equal the video material, in the near future.

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