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| Image by Greg Crowhurst |
'It is important to note that the full reality of a person's disability and illness experience can be missed if the moment they manage to communicate is considered the norm, when it is in reality rare to impossible.'
Severe Myalgic Encephalomyelitis (ME) includes people with very severe and profound ME.
In order for family carers, agency carers, doctors and other healthcare staff to manage Severe ME they would be required to know about Severe ME, in particular they would need to know details of the the complexities that separate Severe ME from less disabling severities in ME; they would need to recognise the distinctions between the illness as suffered by someone with mild or moderate ME and know that those with severe ME suffer a completely different condition, i.e., an horrendous life limiting condition that sees some patients permanently confined to bed, tube fed, suffering various hyper sensitivities, and post exertion crisis in response to the smallest movement, or to someone being near them trying to support them.
Those who describe themselves as having mild or moderate ME and some people in the severe ME category, suffer from fluctuating symptom severity, and can also suffer from very severe symptoms and profoundly disabling features at times.
Before we discuss management of Severe ME, it is important that we include some important information particular to Severe ME:
- the clinical features and symptoms;
- impact of symptoms on quality of life;
- important considerations for severe ME;
- problems and challenges for the person with Severe ME;
- challenges facing the person with Severe ME caused by others;
- the reasons why people with Severe ME may have to attend hospital or ED or other care setting;
Important notes about the complexities of managing severe ME cases
Clinical Features of Severe and Very Severe ME
Cardinal Feature
Post Exertion Response/Crisis or Post Exertional Neuro
Immune Exhaustion (PENE), which in simple terms means lowered functional
capacity due to dysfunction in aerobic energy metabolism, is the cardinal feature in Severe ME. Simple movement in bed, a carer walking into the patient's bedroom, cognitive tasks,
such as thinking and speaking, all use oxidative energy metabolism. Exposure to
light and sounds are like exercise for people with very severe ME, sometimes
causing permanent crashes and further loss of function.
Other features
ME can cause dysfunction in all the major systems - neurological, immune, endocrine, cardiovascular, musculoskeletal, gastrointestinal, respiratory, and genito-urinary, which is why people with Myalgic Encephalomyelitis have so many symptoms. Below are some of the symptoms in Severe ME repeatedly reported in feedback.
Minimal energy levels, resulting in the patient being mostly housebound or permanently confined to bed;
Paralysis - full body or partial;
Severe generalised continuous agonising pain;
Severe continuous headache;
Cardiac Issues;
Hyperaesthesia/extreme sensitivity to touch;
Abdominal pain, worse after food—this may be so severe as to interfere with nutrition;
Sleep disturbance, possible hypersomnolence or difficulty sleeping because of pain and headache;
Major problems with cognition, concentration and short-term memory;
Heightened sensory sensitivities, including to light, sound, touch, taste and smell - smells set the person back and they can feel so unwell just from someone’s perfume;
Multiple chemical sensitivities;
Severe reactions to medications;
No possible movement;
Problems with eating and drinking - e.g., swallowing issues which can be due to either general weakness or actual dysphagia, or severe reactions to food, and these may necessitate tube feeding;
Aphonia (mechanism unclear);
Myoclonic jerks;
Incontinence;
Temperature dysregulation;
Increased inflammation;
Numbness, pins and needles;
Extreme discomfort;
Severe hyperacusis;
Fainting (POTS/other);
Orthostatic intolerance;
Autonomic dysfunction;
Unbearable muscle tremor;
Spasms/seizures;
Multiple sensitivities including sensitivities to fabric, to movement as well as seeing movement;
Sore throat;
Tender glands;
And many other possible symptoms and features.
The danger is that the long list of symptoms can unintentionally, underplay their severity and seriousness, the totally disabling nature and the individual intensity of each one, which together add up to a ‘physical nightmare of indescribable proportion’.
Impact of Symptoms on Quality of Life
The symptoms experienced by someone with Very Severe/Profound ME can be unimaginable - the level of highly tormenting hypersensitivities to ordinary things are both distressing and attacking, adding to the difficulty of getting safe, supportive, and experienced care.
The sheer severity of suffering experienced by patients with the above symptoms can actually be worse than that suffered by patients with other chronic conditions such as multiple sclerosis and cancer.
The abdominal pain may be so severe as to interfere with nutrition, an issue which has been responsible for some fatalities.
The severity of the photosensitivity can be a trigger to disbelief, as the doctor may find it difficult to accept that the patient not only has to lie in a darkened room but has to wear eye protection in addition.
Considerations for Severe ME
Severe ME includes people with severe, very severe and
profound ME. Some patients with milder or more moderate ME may experience
severity fluctuations in some symptoms, going from from mild to profoundly
severe, so someone with mild or moderate ME may suffer from severely disabling
symptoms.
- Severe ME constitutes a major challenge, not only for the patient and the family, but also for the doctor confronted with it, often for the first time. It requires from the doctor commitment, calmness, courage and compassion, indeed many of the qualities of the ideal doctor.
- For very severely affected ME sufferers there is virtually no ‘safe’ level of physical or mental activity, orthostatic stress or sensory input; no level which does not produce a worsening of symptoms.
- Even the most basic actions - speaking a few words, being exposed to moderate light or noise for a few minutes, turning over in bed, having hair or body washed in bed by a carer or chewing and swallowing food - can cause severe and extended symptom exacerbations in severe patients.
- It is not uncommon to hear of very severely affected sufferers who are unable to bathe themselves (or even be bathed by a carer) more often than once a week, or even once every few weeks, or even less.
- Some sufferers cannot chew or swallow food any longer and need food to be blended to a soup or at worst to be tube fed. Many patients with severe ME are no longer able to toilet themselves. Either sufferers are just too ill to do these things at all, or they cannot tolerate the very long and severe relapses that come after such activities.
- For people with severe ME even the smallest movement, thought, touch, light, noise or time being upright can make their already very severe symptoms far worse. Few illnesses demand such isolation and loss of quality of life as severe ME.
- Very often people with very severe ME can barely communicate, or even tolerate the presence of another person. This is what makes ME such a cruel disease and such an isolating disease.
- The illness can cause an unrelenting level of disability, suffering and isolation that is just unimaginable to anyone not familiar with very severe ME.
Problems and Challenges for the Patient with Severe ME
Patients with ME have often suffered from disbelief on the
part of their doctors or other healthcare staff, and even those severely affected
are not protected from this disbelief.
This disbelief can operate at several
different levels:
The first level is when the doctor disbelieves that ME even
exists as an organic illness in the first place. This can lead to inappropriate
referral to psychiatrists, and then to harmful management plans.
The next level is for the doctor to accept that ME exists,
but to disbelieve that a particular patient has it.
A further level is to have an overoptimistic view on the
efficacy of certain forms of treatment, usually Graded Exercise Therapy (GET)
and/or Cognitive Behavioural Therapy (CBT). This leads to the patient having
the diagnosis of ME withdrawn when they fail to respond to these management
strategies, or as so often happens when the patient’s condition worsens.
GET is especially likely to lead to such deterioration.
Rather than drawing the conclusion that these therapies are misguided, the
doctor often changes the diagnosis to one involving a psychological causation.
The final level is when the doctor diagnoses ME at a stage
when it is still mild or moderate, and then the patient’s condition worsens to
the extent that it becomes severe. The doctor can then lose confidence in the
original diagnosis, and change this to a psychological diagnosis such as
Pervasive Refusal Syndrome, MUS or FND.
For the patient with severe ME to be subjected to such
disbelief is of course adding so much stress and harm to a very ill and
disabled person.
The worst scenario is when the paediatrician, as a result of
some of the above varieties of disbelief, makes a provisional diagnosis of
Fabricated and Induced Illness (FII), and refers the patient to Social Services
as a case needing safeguarding.
(the above information is based on notes by Dr Nigel Speight from 2020
paper entitled Severe ME in Children).
Challenges Facing the Person with Severe ME Caused by Others
People with Very Severe ME can become isolated. As families, friends, and doctors slip away due to lack of knowledge, doubt and denial, Severe ME patients have to survive without care precisely when they need help the most. In the absence of assistance, those who are very severely ill continue to decline until they reach a state of medical crisis and land in the emergency department of a hospital.
The first challenge when a person with ME ends up in hospital is the enormous hyper sensitivites that are suffered by them as a result of lights, noise, heat and dealing with many staff and others in the hospital.
The second challenge is absence of concise guidelines from health agency sources that address the very severe end of the disease spectrum. There are many informal sources on ME, but we need buy-in from health agencies and busy ME-unaware hospital practitioners. The absence of guidelines make it more challenging for the patientfamilies and carers to advocate for my friend and undermined his case.
Reasons People with ME including Severe ME attend ED
Dysautonomia/POTS flares, severe dehydration, extreme pain, extreme headaches, malnutrition, clotting issues (DVT, elevated D-dimer, etc), infection, cardiovascular autonomic/low blood volume issues including heart palpitations, PVCs, chest pain, fast hr, microvascular angina coronary microvascular dysfunction (CMD) and microvascular ischaemia; severe aura migraine that affects speech and vision; hemiplegic migraine which affects speech; new onset migraines, abdominal migraines, deficiencies-related issues e.g., very low level of B12; non-epileptic seizures or tremors or spasms with/without features such as slurred speech and aphasia including oesophageal spasm; paralysis (whole body or partial), very low/very high bp, respiratory issues such as severe breathlessness, air hunger and low oxygen levels; bradycardia, tachycardia, loss of consciousness, weakness in legs - not able to stand; vomiting and nausea; when medications are not helping extreme symptoms, undiagnosed MCAS symptoms, UTIs, visual disturbances.
Important Notes about the Complexities of Managing Severe ME Cases
Doctor and other healthcare staff must know about the unique medical needs of people with very severe and profound ME, focusing on gastrointestinal manifestations and extreme hyper sensitivities.
Very severe ME can be a very frightening disease, not only for the family and carers of the severely ill patient, but also for doctors who are unlikely to have any previous experience of these most severe presentations. Patients can die from very severe ME and it’s complications, and this is more likely to happen when their condition is badly managed by ill-informed doctors. It is important that doctors listen to the patient, or if the patient wishes, to their carers.
Over time, very severe patients have less and less access to primary medical care simply because they become too sick to manage medical appointments or to have home visits from their doctor. Many GPs don’t want to take on a highly complex severe ME patient or know how to manage one. These patients end up falling through the cracks, have no meaningful healthcare, and continue to waste away in isolation, some end up dying due to neglect and/or malnutrition.
Those with very severe illness cannot travel for medical care, and very few have an ME specialist. Many patients struggle to find a helpful GP.
People with severe ME need GPs who can make house calls and coordinate among the various specialists involved with a complex patient.
Specialist help should be available for these very severe cases. Specialists seen in isolation run their standard tests, many of which routinely come up negative. Severe ME patients require an integrated care model in which there is cohesion among specialties which sees the patient having an affective multidisciplinary healthcare team around an individual patient-centred approach.
While it may be understood from a glance at information online or elsewhere that the severe and very severe ME patient should receive advanced medical care outside of the hospital setting, the video linked below by Dialogues for a Forgotten Illness, brings the depth of understanding and acceptance of this challenging concept to the viewer. A must see for doctors and other healthcare practitioners accepting the responsibility for these patients and a must see for carers confronting the decision as to whether the patient in their care needs to go to hospital and, if so, how best to manage it.
Managing Severe ME
One of our primary goals is to prevent patients with Severe ME from slipping through the cracks and passing the point of no return. As well as our previous notes about Managing and Treating Myalgic Encephalomyeliitis which includes notes which may or may not be suitable for some people with Severe ME, please see our notes on management in Severe ME below which include:
- Important Notes about Pacing and Resting
- The Value of Home Visits by the Doctor/GP
- Creating a Severe ME Accessible Care Setting
- Gurney Transportation for Patients who Must Remain Lying Down
- Malnutrition in Severe ME
- Paralysis in Severe ME
- Resources for Hospital Admission/Care Setting for People with Severe ME
- Other Resources to Support Management in Severe ME
Important Notes about Pacing and Resting
People with Severe ME spend days struggling to cope from moment to moment in the most awful suffering. For those, and others with ME, pacing or resting may not be an option to manage ME because the body can be in such turmoil that patients can't pace enough to impact disease processes, for example, someone who has severe/very severe or profound ME who lies completely still because any movement at all can cause awful debilitating symptoms. For those patients no amount of pacing or resting can help if digesting food requires more energy than the body can produce; no amount of pacing can help when trying to keep warm; no amount of pacing can help when the person has multiple sensitivities and is already responding negatively to light or sound or movement.
Recognition of other interventions such as IV fluids, peg feeding, etc may be necessary in some cases.
The Value of Home Visiting by the Doctor
People with more severe ME may find it very difficult to attend at the doctor's surgery or hospital and will require ME-friendly healthcare practice. The magnitude of the challenge posed by a case of severe ME can produce an avoidance reaction on the part of some doctors. Many patients are virtually abandoned by both their family doctors and local and regional specialists. The practice of doing home visits seems to have gone into decline, both with general practitioners and hospital consultants.
This is regrettable, especially in the case of severe ME. The cases mentioned in the paper by Dr Nigel Speight entitled Severe ME in Children all seemed to benefit from the ongoing home visits they received, both for moral support and symptomatic treatment. Sadly, many cases of severe ME lie at home without having seen a doctor for many years.
Create a Severe ME Accessible Care Setting
Tips on how to support some people with severe ME patient who can attend for a medical appointment in a doctor's surgery or hospital setting, but with difficulty
Firstly, here's why patients with Severe ME, and others with less severe ME, may need a more accessible care setting:
People with Severe Myalgic Encephalomyelitis (ME) have a limited amount of energy and suffer from a post exertional crisis, i.e., PENE. Helping them conserve their energy and providing an ME- friendly environment will reduce the impact of attending essential medical appointments.
People with Very Severe/Profound ME are most often too ill to attend
doctors surgeries, hospitals, outpatient departments. These healthcare settings are not generally organised to accommodate multiple chemical sensitivities, hyper sensitivities such as noise sensitivity, light sensitivity, and the need for bed rest, especially in the case of a patient experiencing a crash or paralysis. Being exposed to the major physical trauma of dressing to go out, of travel and then being exposed to so many healthcare staff and other people, and so many sources of noise, bright lights and chemicals will be too much for the person with Very Severe/Profound ME.
People with Very Severe/Profound ME are physically profoundly ill and often cannot take the risk of trying to access support, from a consultant or doctor unknown to them, when any interaction and effort may lead to profound consequences of health deterioration, temporary or permanent, or very long term.
People with Very Severe/Profound ME cannot endure two-way communication at times, and even if possible will be limited and potentially harmful, leading to severe post-exertional crisis. It is essential that anyone trying to communicate with a person with very severe/profound ME understands the way the person communicates, what they can tolerate and how little energy they have and not ignore or forget the persons reality.
People with Very Severe/Profound ME cannot access anything required to negotiate with doctors surgeries and hospital settings, treatments, follow up appointments, Physiotherapy, OT, medical assessments, surgeries, etc.
People with Very Severe/Profound ME do not have enough energy to explain their chronic condition and symptoms or express their concerns about their health, even if the person can temporarily access a doctor or healthcare provider. The effort of speaking, if the person is able to speak, is too much and can lead to a post exertional crisis which goes beyond PENE as we know it among those less severe.
It is important to note that the full reality of a person's disability and illness experience can be missed if the moment they manage to communicate is considered the norm, when it is in reality rare to impossible.
People with Severe/Profound ME cannot concentrate and deal with complex interactions with other people because of extreme pain and physical discomfort, the interaction itself will most likely increase the pain even more.
People with Severe/Profound ME cannot function during a period of paralysis. Paralysis makes any interaction impossible, the patient cannot function when they are completely paralysed either mentally or physically; they cannot even speak or open their eyes. Transient paralysis can hit any muscles at any moment.
'Create a Severe ME Accessible Healthcare Setting' Information Sheet by ME Advocates Ireland (MEAI), an info sheet for doctors and healthcare staff which includes tips to aid a person with Severe ME attend their appointment here
Notes on Crash/Paralysis pages 6, 8 and 9 here
Gurney Transportation for Patients who Must Remain Lying Down
Some patient's may only be able to be brought to hospital by ambulance because they need to be lying down at all times. The level of disability that requires gurney transportation for someone with Severe or Very Severe ME and/or structural issues usually comes with extreme suffering. The inability to sit up accompanies myriad symptoms ranging from brain inflammation to unrelenting pain throughout the body.
Orthostatic Intolerance: Some people with ME might have symptoms of orthostatic intolerance that are triggered or made worse by standing and/or sitting upright. Those with severe ME can suffer from this symptom and find sitting up or standing next to impossible. These symptoms can include dizziness and light headedness; changes in vision; weakness; patient feeling like their heart is beatin too fast or too hard or skipping a beat.
Finding non-urgent transportation on a gurney (or stretcher) for a bed-bound person is not just challenging, sometimes it seems impossible.
Gurney Guide by Galen Warden here.
Malnutrition in Severe ME
Some of the most severely affected ME patients experience serious difficulties in maintaining adequate nutrition and hydration and some will require feeding enterally.
Problem: In the absence of accurate information about very severe ME, in particular information on malnutrition, many doctors and other healthcare practitioners conclude a malnourished patient must have an eating disorder and, therefore, a psychiatric condition. The HSE's and other health agencies' lack of recommendations for strategies for Severe ME validate false stereotypes about the disease, especially when viewed through the eyes of a busy doubtful doctor or consultant. We need to change this narrative.
How to Support Patients with Malnutrition Problems:
Life-Threatening Malnutrition in Very Severe ME an article by Helen Baxter
,Nigel Speight
andWilliam Weir
Paralysis is a terrifying feature that has often been reported in feedback from people with Severe ME.Paralysis in ME means the patient cannot feel and cannot move and has no choice. It can take over part of the body or the whole body, i.e., partial, or full body paralysis.
The Canadian Consensus Document on Myalgic Encephalomyelitis 2003 defines a crash as:
“a temporary period of immobilizing physical and/or cognitive exhaustion”.
How to support the patient experiencing Paralysis
(i) Important Notes in the event that a patient enters a paralysis/crash phase while in a care setting
The patient may become paralysed and unable to inform the healthcare practitioner, a doctor or other staff in a healthcare setting, of the extent of their pain or other symptoms. Paralysis may be limited to limbs only or may affect the whole body.
Sample Vital signs of an ME patient in paralysis/crash/PENE state:
BP can vary hugely, for example, in the 130-160/85-95
• Going as high as 224/164 or
• In a crash state BP will drop to <120/<80 (e.g. 96/64) which results in the patient feeling drained & unwell.
• Temp basal temp usually around 35.5, can increase in warmer weather
When exhausted or experiencing post exertional response (PENE/PEM) temperature can drop as low as 33.8.
• Legs/arms will be very cold & head very hot with raised temp, in this case cover limbs and cool head, fan/cool cloth
OR
• Whole body temp lowers & all body requires warming, especially extremities.
HR Resting HR varies 40-50 depending on current baseline.
• Heart rate varies hugely depending on current baseline and ‘activity’
• ‘Activity’/effort can increase heart rate to 130+, going to bathroom, eating etc
• During a crash or when exhausted HR can drop to 30, this is part of the ME ‘dauer’ state which will resolve without intervention.
Do Not
• Attempt to elicit a “pain response” – this will hurt the patient
• Raise one’s voice to “get through” to the patient – noise hurts
• Tell the patient to open their eyes – the patient may not be able to do so for several hours
Do
• Take hold of patient's fingers and frame questions to require a “Yes” answer
• Do this quietly and slowly
• Give the patient time:
to hear
to process the words
to move a finger to indicate “yes” – this is an extreme effort
• Reassure the Patient that you know they are paralysed and you will check on them
More information re crash/paralysis management pages 6, 8 and 9 here
(the above sample vital signs and advice is a portion of the full document)
(ii) Important Notes in the event that a patient enters a paralysis/crash phase while at home
Severe ME Patient and Carer expert information about Paralysis from severe ME patient Linda Crowhurst and her husband, carer Greg Crowhurst here
Resources for Hospital Admission/Care Setting for People with Severe ME
Includes Personal Care Plan, My Needs Template, Consent to Treatment Statement and Form, Letter to a Hospital or doctor to avoid a possible psych referral/ward stay, Prevention of Probelms Due to Bed Rest and Prevention Information, here
Other Resources to Support Management in Severe ME
Most if not all current diagnostic criteria for ME do not address the problems that people with very severe and profound illness face, i.e., malnutrition, paralysis, severe reactions to food and medications and sensory issues to name a few. Guidelines for ME seldom include vital advice to support carers, doctors and other healthcare staff about these issues in Severe ME. It is important that guidelines are updated so that medical practitioners in particular are Severe ME- aware and recognise the signs and features and know what to do to take care of the patient.
Various Information Documents and Papers
- Personal Care Plan which gives an overview of illness in a person with Severe ME, including treatments and essential care in healthcare settings: Considerations for Severe ME
- Information from a UK charity that helps children and young people with ME and their families, Tymes Trust (currently there is no charity in Ireland that deals specifically with paediatric ME.
Films About ME and Managing Severe ME
- An introduction to the more severe end of the spectrum of ME from Dialogues for ME, by Natalie Bolton & Josh Biggs, produced with a Wellcome Public Engagement Fund Award : Severe & very Severe ME
- 'Voices From the Shadows' - About the trailer/30 min film and 1hr film here, available on Vimeo, free using the code "VOICES"
- Film about Preventing Avoidable Malnutrition in Severe ME by Helen Baxter here
Books about Severe ME: Carers Notes
We and the ME communities worldwide are grateful for the work of writer and carer of Severe ME patient Linda Crowhurst, Greg Crowhurst; and to Linda Crowhurst for being so generous sharing experiences and insights of your life with Severe ME. Thank you both. Books by Greg based on his experiences as a carer and information provided by Linda focus on caring for Severe ME patients and provide a close focus and concise overview of Severe ME which would otherwise be unknown to many.
- Severe ME: Notes for Carers here
- Severe ME: More Notes for Carers here
- Issues of Noise, Light, Touch, Chemical & Movement Sensitivity in Severe/Very Severe ME that Carers Need to be Aware Of Free PDF
- Very Severe ME - Underlying Principles of Care Free PDF
- The Care Needs of People with Severe ME Free PDF
Further Considerations for Management in Severe ME
Notes about Prescription Medicines
While there are no treatments approved specifically for ME, a number of different pharmacological and non-pharmacological treatments can help reduce the severity of symptoms.
Different drugs have different effects on symptoms and they also differ in their side effects from one patient to another. If a drug is ineffective or cannot be tolerated, it may be worth systematically trying others.
People with ME often have a limited tolerance to drugs, so starting lower doses than usual may be needed, then slowly increasing if appropriate. Finding the 'sweet spot' may involve trial and error. Particular medications might not suit all. It's a case of trial and error with treatments. Some patients react badly to medicine, be extremely cautious.
NB: A person with Very Severe ME is likely to be extremely drug sensitive; they require an awareness of anaesthetic sensitivity from the medical practitioner or other healthcare provider.
Some examples of commonly used medications for ME
Commonly used medications in management of symptoms in ME include low-dose naltrexone (LDN), duloxetine, gabapentin, cyclimorph, oxynorm or pregabalin for pain; fludrocortisone, midodrine, olanzapine, pharma GABA, amitriptyline, pyridostigmine, low dose beta-blockers and/or intravenous hydration for orthostatic intolerance; low dose rivotril (Klonopin) (2.5 mg) to get a handle on overactive central nervous system’s adrenaline rushes, mirtazepine at night to help with sleep along, occasional use of modafinil, methylphenidate, or dexedrine for cognitive or fatigue issues, molipaxinm melatonin, prednisone, adderall, corlanor, valium; in addition to these basic treatments, some disease experts are evaluating the selective use of antivirals and immune modulators in ME and have seen evidence of efficacy in some patients; some extremely ill people with ME have had success with low dose abilify (antipsychotic) - used off label to treat neuroinflammation but its use comes with serious warnings; iv fluids and iv zofran for dehydration, iv saline for dysautonomia
Note: Despite the availability of medicines for treating various symptoms in ME some people cannot tolerate medicines even at low doses.
Note: For people with Severe/Profound ME prescribing new medications is a very high risk strategy without knowing if the person will be able to tolerate new medications and without understanding possible reactions. Prescribing new medications should never be undertaken without due consideration of risk and possible side affects. People with very severe/profound ME are desperate for support and so open to mistreatment bywho don't understand the risks. Patients are at massive risk of deterioration and harm being inadvertently or carelessly done to them; for this reason a proper Risk Assessment should always be performed.
Notes about making a referral
Referral to other services may also be required for additional assessment, symptom control or further support and advice. This could include referral to a specialist consultant, physiotherapist, occupational therapist, endocrinologist or rheumatologist. Unfortunately most won't be familiar with ME.
There are two private consultants in Ireland with an interest in ME who treat people with the illness, one is Dublin based and the other is in Co Roscommon. Please contact ME Advocates Ireland (MEAI) for further information at info@meadvocatesireland.com
Very Important Notes about inappropriate referrals and inappropriate treatments
We need to get past the current climate where doctors, consultants and practitioners in hospitals threaten ME patients, including children, with default referrals to psych, to graded exercise, to talk therapy, lightning process, and much worse..to social services.
IMPORTANT WARNING
GRADED EXERCISE THERAPY (GET) or any programme that uses fixed incremental increases in physical activity or exercise CAN CAUSE HARM Graded Exercise Therapy is NOT the same as Pacing. GET requires the patient to gradually increase activity over a period, potentially pushing them to repeatedly trigger the PENE response described further above. GET has been reported by many patients, scientists & some orgs to be unhelpful and harmful and has left some patients significantly worse than they were before they started.
Given that PENE is the hallmark symptom of ME, GET is not an appropriate treatment for people with ME.
Resources for Explaining the Dangers of Graded Exercise Therapy (GET)
- Graded ExerciseTherapy (GET) warnings explaining the dangers of GET from the 25% ME Group entitled '25% ME Group stance on Exercise' here
- Understanding the Dangers of Graded Exercise Therapy Video from Dialogues for ME here
- More from Dialogues for ME about the dangers of GET here
- Workwell Foundation Opposition to Graded Exercise Letter for Doctors and other healthcare staff here
- NICE ME Guideline 2021 Piece on Greaded Exercise Therapy (GET):
The new NICE ME Guideline 2021 represents a major reversal
in advice for clinicians. “The committee concluded any programme using fixed
incremental increases in physical activity or exercise (for example, graded
exercise therapy), or physical activity or exercise programmes that are based
on deconditioning and exercise avoidance theories, should not be offered to
people with ME. The committee also wanted to reinforce that there is no
therapy based on physical activity or exercise that is effective as a cure for
ME.”
The NICE Guideline 2021 therefore states
1.11.14 Do not offer people with ME:
- any therapy based on physical activity or exercise as a
cure for ME
- generalised physical activity or exercise programmes – this
includes programmes developed for healthy people or people with other illnesses
- any programme that does not follow the approach in
recommendation 1.11.13 or that uses fixed incremental increases in physical
activity or exercise, for example, graded exercise therapy (see box 4)
- physical activity or exercise programmes that are based on
deconditioning and exercise avoidance theories as perpetuating ME
Further Warnings
Do Not Offer the Lightning Process, or therapies based on it to people with ME
Talking therapies such as CBT can at best provide psychological support, and at worst contribute to harm by using precious energy, or misinforming patients. CBT does not cure ME and must not assume people have abnormal illness beliefs and behaviours as an underlying cause of their ME
Current default referrals to psychiatry where ME has been diagnosed or is suspected can be inappropriate and harmful because the referral can delay diagnosis and management for the person with ME which not only adds to a feeling of being dismissed and denied care, but can often lead to deterioration and worsening severity
We receive feedback from time to time from patients in Ireland and hear of others elsewhere with Severe or Very Severe ME iwho have been held up by psych when in hospital. They had been admitted to hospital for urgent check ups and issues such as new paralysis, ongoing rapid weight loss and malnourishment, then rather than getting the care they need, hospitals have taken inappropriate measures, such as insist the patient gets out of bed or move/exercise; insist on sending them for psych assessment and psych therapy; insist that the patient is suffering from mental illness; ignore family and patients explaining that malnutrition as a result of issues in Severe ME needs particular treatment measures to be taken such as IV fluids and peg feeding; and at worst patients are threatened with involuntary commitment.
After several days/weeks in hospital, patients return home but arrive in a much more precarious state of illness, some possibly now fighting for their life.
Referrals to psych speaking therapies come at a high cost, and graded exercise is harmful in Very Severe ME. Unfortunately, refusing these types of treatment only worsens the situation for the Severe ME patient and feeds the psychiatric narrative about the disease, placing the patient in a tough spot. The alternative is allowing the patient to be pushed into a health crisis, and possible death.
We ask the HSE and other health agencies to consider the needs of those very severely affected by ME, and to make provision for a concise guideline document for general practice doctors, hospital staff and home care services who have no experience working with a Severe ME patient. Ideally, this document would elaborate on the unique medical features and disabilities common to people with Very Severe ME.
Disclaimer: The information in this post is for general information purposes only. While we endeavour to keep the information up to date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the post or the information, products, services, etc contained in the post for any purpose. Any reliance you place on such information is therefore strictly at your own risk.The suitability of any solution is totally dependent on the individual. It is strongly recommended to seek professional advice and assistance.
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