Anaesthesia and M.E.

Introduction

In addition to physical activity, cognitive activity and orthostatic stress some patients with Myalgic Encephalomyelitis are also very likely to relapse with anaesthesia and need extra care during all stages of surgery.

Whether or not they have a formal diagnosis, some patients with ME may be sensitive to certain drugs used for anaesthesia. Your anaesthetist may need to create a special anesthesiology protocol for you.

Preop Assessment

A preop assessment gives patients an opportunity to discuss their needs prior to attending hospital and to raise any concerns they may have; preop is an opportunity to:

• discuss in advance of surgery any sound sensitivity, light sensitivity or chemical sensitivities;

• ask whether it's possible to minimize sleep-time disruptions e.g., middle of the night blood pressure monitoring, etc;

• discuss any food sensitivities in advance;

• discuss temperature sensitivities, and possible accommodations including adjustment of operating and recovery room temperatures, provision of extra blankets, pillows, etc;

• discuss the possibility that you will need extra hydration before, during, and after surgery.

• get your surgeon's office to consult with your doctor/consultant re POTS; doctors may not be familiar with the finding that many POTS and ME patients have low blood volume and may be reluctant to provide more hydration than they would a healthy person);

• discuss the fact that it may take you longer to recover from surgery;

• discuss the fact that you may experience more pain than healthy people having the same operation/procedure;

• discuss pain management;

• discuss your other care needs (introduce your Personal Care Plan*)

The more you can make sure is discussed in advance of your admission to hospital for surgery/procedure to address your unique, potential needs, the better.

Anaesthesia

The preop assessment is a good time to discuss anaesthesia and pass on information re anesthesia and ME to your doctor/consultant, preop nurse and the anaesthetist.

Two resources linked below give information on many of the different issues to be aware of regarding anesthesia, surgery and ME.

- About Anaesthesia and ME from Jodi Bassett of the Hummingbirds' Foundation for ME here.

- Anaesthesia information for Myalgic Encephalomyelitis (ME) created by the Grace Charity for ME here (please see from page 6)

* Care Plan

A personal care plan may be useful for anyone being admitted to hospital for surgery or a procedure. The Sample Personal Care Plan can be copied/downloaded/printed and edited to suit you or the person with ME in your care. Organising it takes time, and it is important to remember to carry the care plan for any hospital admission including to ED (A&E).

Please see our draft Personal Care Plan which needs to be edited by you to exclude information that does not apply to you and to include information relevant to your care needs.

Tip: After drawing up a Personal Care Plan document it would be worthwhile having the document signed off by your doctor so that it has greater currency, i.e. get your doctor to certify the document.

 

Other Resources for a Hospital Admission

We have compiled tools to support people with ME during a hospital admission or attendance at other care settings, and for when being admitted for procedures/other reasons.

Included in our compilation: Hospital transfer/Stay Notes, Personal Care Plan, Care Sheets, 'My Needs' Template, and much more; please see further resources for a hospital admission via link here.

Important Notes re Potential Paralysis in Some People with ME

Paralysis is a terrifying symptom that has often been reported in feedback from people with 

Severe (ME) yet it is rarely referred to and has not been researched. 

Paralysis in ME means the patient cannot feel and cannot move and has no choice about it.
Paralysis in ME can take over part of the body or the whole body, i.e., partial, or full body paralysis.
Paralysis, a recognised part of ME, is generally ignored, downplayed, or treated as not real.

"I have been an in-patient four times in the last year, each time following a procedure which has nothing to do with ME but which of course impacts strongly on me, causing paralysis for a few hours. During the paralysis, I can hear but cannot speak or move any part of my body or open my eyes. 

 

Over a period of hours I regain movement but it takes days to be able to 'manage' even in a hospital bed" 

 

- Severe ME Patient

Please see more about Paralysis in ME here.

Severe ME

It is important to note that for people with Severe ME a hospital admission or surgery may be impossible or extremely difficult because of the severity of illness and associated symptoms and disabilities. 

Organising a hospital stay or surgery must be done carefully and with caution.

People with Severe Myalgic Encephalomyelitis require unique care due to the tendency for the illness to be exacerbated by everyday stimuli such as light, noise and movement.

They are often too ill to use a wheelchair or can only do so to a very limited degree. Many need to spend their time lying flat in silence and darkness to avoid deterioration.  Some are tube-fed, incontinent, unable to communicate, allergic to medications, and unable to move.  

For people with very Severe ME 'resting' implies 'complete incapacitation’ which means that inactivity is the only option. Those severely ill are often incapacitated because it is physically impossible for them to do anything else.  Lying down in a dark room in silence and with absolute zero sensory input, with absolute zero physical movement or cognitive activity. 

 

Please see more about Severe ME and Management of Severe ME 

• About Severe ME here 

• Management of Severe ME here

• The Gurney Guide for Severe ME Transportation here

• Supporting People with Severe ME in a Healthcare/Other Setting in the Safest Way here 

• Reasonable Adjustments for Severe ME in Hospital here

• Comunication Supports in Severe ME here

We have come across a podcast from the Royal College of Anaesthetists which focuses on ME and Anaesthesia (50 mins long). 

Dr Anton Kruge (25 years experience as an anaesthetist), Dr Charles Shepherd and Helen Baxter discuss ME and anaesthesia. In the episode called 'Anaesthesia on Air' Dr Anton Krige, RCoA Clinical Lead for ME, talks with Dr Charles Shepherd from the ME Association and Helen Baxter, a patient advocate for ME patients, about the College's latest patient information project ME and anaesthesia. They explore this poorly understood medical condition and the strategies that anaesthetists will find useful in managing these patients in the perioperative period. Please access the podcast here

'ME/CFS and Anaesthesia Guide' by the Royal College of Anaesthetists UK referred to in the podcast here 

There is a pdf download entitled 'ME/CFS and Anaesthesia' included in the above mentioned guide available here. 

We have highlighted the above pieces we came across via UK advocacy because we feel that they may be useful to someone. We want to stress that despite labels and illness names used in the pieces, we only use and advocate for the use of the ME label, and we call the illness we advocate for 'Myalgic Encephalomyelitis (ME)' as per the International Consensus Criteria and Primer. We recognise that others use the CFS or ME/CFS label.

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. 

Adrenaline Surges in M.E.

 

 

Assisting the M.E. Patient in Managing Relapses & Adrenaline Surges

What is an adrenaline surge and how does this affect M.E. patients?

"People with M.E. can sometimes operate significantly above their actual illness level for certain periods of time thanks to surges of adrenaline - albeit at the cost of severe and prolonged worsening of the illness afterward.

Adrenaline is often referred to as the 'fight or flight' hormone as it kicks into action in situations of potential danger. However, adrenaline also kicks in when the body is in physiological difficulty, which is very often what is happening to severe M.E. sufferers. Adrenaline surges make the heart pump faster and raise the blood pressure, forcing blood around the body with greater force to supply the muscles with more oxygen, so that they can make a greater effort. Surges of adrenaline increase the metabolism.

They also relax and dilate the airways so that more oxygen than usual can be taken in. Adrenaline surges can also decrease the amount of pain felt. As a result of all of these factors, adrenaline surges - while they last - have the ability to increase physical speed, strength and other physical abilities.

Unfortunately, when these bursts of adrenaline wear off - as they must - people with M.E. are left far more ill as a result for many days, weeks, months or even years of overexertion.

People with M.E. are harmed by adrenaline surges, both by the physiological stress to the body of the changes caused by adrenaline, and by the extra activity which adrenaline enables, which may be far beyond the body's normal limits so that such activity causes damage. For every short term 'gain' there is a far greater loss overall.

Surges of adrenaline can last hours, days, weeks or even months at a time.

These adrenaline surges are a bit like credit cards. They allow patients to do things that they could never otherwise do, or 'afford.' But the interest rate is extortionate, sky high, a killer."

~ The Hummingbirds' Foundation for ME

Jodi Bassett compiled the above information in her Hummingbirds' Foundation for ME website to:

• describe the characteristics and signs of adrenaline surges and relapses in ME, and
• explain how to manage adrenaline surges for the benefit of patients and carers, as well as for newly ill ME patients.

Managing Adrenaline Surges in ME

 

• Why do M.E. patients sometimes overexert themselves, considering the severe consequences?

• What signs may indicate a relapse or an adrenaline surge?

• What can you do to help?

Please see answers to the above questions and more about adrenaline surges here

Thanks to Jodi Bassett & the Hummingbirds' Foundation for M.E.

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. 

Supporting People with Severe ME in a Healthcare Setting in the Safest Way

    

  

We recently came across a 2004 piece by Greg Crowhurst which was published in the Nursing Standard (UK) in February 2005 (pgs 19, 21, 34-38). The information emphasises that there is a lack of medical education and awareness about severe ME and that it is misunderstood despite its seriousness.

The information is aimed at nursing and other healthcare staff; it could also be used in any health/social care setting as well as in a home/nursing home setting to educate carers and staff who meet a severe ME patient, to support the patient in the safest way possible.

We have pulled out relevant extracts which may be useful for someone with severe ME, please see those in images and via our link below. Key features and symptoms are presented along with possible service responses and treatment options.

The items could be printed out and added to your medical file/presented to healthcare providers and others.

Please see all printable information via the link here

Many thanks to Greg Crowhurst

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 in some instances. 
 

Highlighting the seriousness of Myalgic Encephalomyelitis (M.E.)

 

   Trigger warning ⚠: the post mentions deaths in Myalgic Encephalomyelitis (ME)

“ME cruelly killed my daughter - the Dragons Den scandal is a disgrace” ~ Clare Norton

Severe ME

The symptoms experienced by someone with Severe/Very Severe/Profoundly Severe 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.

In its worst form, people with severe, very severe and profoundly severe ME cannot eat or drink, are permanently confined to bed or hospitalised, cannot move, cannot sit or stand up, and are completely reliant on others for their care.

Some severe ME patients suffer from paralysis and malnutrition. Some die because of medical ignorance and neglect.

M.E. ends lives and can result in death

We hope that by posting the following information others will become aware of the horrors perpetrated on those with ME and Severe ME, and on others in the ME community including family members and carers.

Sophia Mirza

In 2005, in the UK, Sophia Mirza (32) died due to medical abuse and ignorance. She died as a result of acute renal failure arising from the effects of ME. An official inquest was held to determine Sophia’s cause of death. The coroner concluded that she died as a result of ME; she was the first person in the UK to have their cause of death registered as ME. More about Sophia here.

Unfortunately, Sophia is not the only one who has died from Severe ME.

Maeve Boothby O' Neill

In 2021, in the UK, Maeve Boothby O’Neill (27) died from very severe ME following medical neglect. Doctors denied her a feeding tube, and later denied total parenteral nutrition which could have saved her life. An inquest into Maeve’s case is ongoing. Maeve's mum, Sarah Boothby pointed to systemic failures in the care prior to her daughter Maeve’s death while battling severe ME. More about Maeve here.

Merryn Crofts

Clare Norton is the mother of Merryn Crofts (21) who became the second person in the UK to have ME listed on their death certificate after her death in 2017.
Years after her death, Merryn’s mum Clare Norton has bravely spoken out again about her daughter, defending her and highlighting the seriousness of ME following the acuseed treatment claim which featured on the Dragons Den on Jan 18th. More about Merryn here.



Merryn's mum Clare was recently interviewed by Ellie Fry from the Mirror, an interview which resulted in a piece that illustrates why the ME community are being harmed by a claim that a snake oil treatment cures ME:

https://www.mirror.co.uk/tv/tv-news/my-daughters-severe-killed-dragons-31989464

We believe that it is incumbent on each and every one of us in the ME community, who are able to, to find a way to ensure that inappropriate and potentially harmful information and practices around ME are reported and highlighted so that informed and educated interventions can be made, inappropriate information be corrected and the reality of ME and severe ME highlighted.

Update 20/02/24

“There is no in-patient provision anywhere within the NHS for anyone with severe or very severe ME; …

this must be tackled at the very highest level.”

Our sincere thanks to Clare Norton & Sean O’ Neill for highlighting the lack of medical care for severe ME patients in interviews with Channel 4 News. 

This is not just an issue in the UK but also in Ireland and worldwide.

…. “difficult hospital admissions, neglect, stigmatisation, disbelief, resulting in death.”

Severe ME is one of the most disabling diseases there is, where patients experience profound levels of suffering and extreme symptoms, which can be life-threatening. 

Merryn Croft’s mum Clare Norton, and Maeve Boothby O’ Neill’s dad Seán O’Neill appeared recently on Channel 4 News to talk about UK NHS healthcare’s refusal of appropriate care for their daughters, and to raise awareness amongst health professionals and society about this group who just don’t exist in the consciousness & experience of those they need knowledgeable, guided & appropriate care from.

(This may be a difficult watch)

The Channel 4 News interviews here

We remember Sophia, Merryn & Maeve

Contact

If you have a query or need further assistance please contact us via email to: 

info@meadvocatesireland.com

You can also contact us privately via the message button on our Facebook page

Excessive Thirst in Myalgic Encephalomyelitis

Excessive Thirst in ME

Excessive thirst in ME is a feature that is mostly overlooked and seldom gets the attention it needs. 

Please see 2023 blog piece about thirst by Irish ME patient Patrick Ussher, a long but very well-written blog post which appears in Health Rising.org; you might want to read it in smaller chunks or read about the gist of the post by Health Rising further below. 

The blog post includes a talk about thirst in ME which ME patient Patrick Ussher gave to the Irish ME Trust (IMET), please see Video.

The Gist of Patrick Usher's Blog Post about Excessive Thirst in M.E.

         by Health Rising 

"Many ME patients suffer from polydipsia – a condition that involves unquenchable thirst, dilute urine, a worsening of thirst during post-exertional malaise (PEM) and, at least in some patients, the development of hyponatraemia (low blood sodium).

Patrick Ussher, an Irish ME patient, used to suffer from this symptom at its most extreme – to the point that he developed life-threatening hyponatraemia and was hospitalised.

In the hospital, he was diagnosed with a mental health condition, ‘psychogenic polydipsia’, in which it is assumed that patients drink enormous quantities of water in the absence of physiological needs and because they are mentally ill.

After his hospital stay, Patrick managed to resolve his extreme thirst through his own research and later wrote a (free) book about what might be causing thirst in ME (details to follow).

In Patrick’s hypothesis, excessive thirst in ME  is mainly caused by the low blood volume that is characteristic of the illness. Research has consistently found that ME  patients do not have enough blood, with some patients short by a litre or more. The most significant reason for this reduction in blood volume appears to be the suppression of the renin-angiotensin-aldosterone axis, a hormonal system which controls salt levels in the body.

The brain actually has two distinct thirst centres: osmotic (triggered when the body’s water content is too low) and hypovolemic (triggered when the plasma blood volume drops by 10%). It is this little-known second thirst centre that is likely being triggered continuously in ME patients.

Crucially, the hypovolemic thirst centre is not ‘looking’ for water in order to be ‘quenched’. Blood is salty stuff and, in order to boost blood volume, the ingested fluids need to be appropriately salty.

Patrick believes that most ME patients fall into the understandable trap of just drinking pure water in response to their thirst (for who doesn’t drink water when they are thirsty?). 

When this water is excreted by the kidneys, though, the blood volume will remain low and, as a result, the thirst will continue – and even grow – as sodium levels and blood volume continue to drop.

When Patrick switched from drinking pure water to drinking ORS (oral rehydration solutions), he experienced a profound decrease in his thirst along with a significant improvement in his quality of life. 

In previous research, ORS has been shown to increase blood volume as effectively as a saline IV in POTS patients.

Later on, Patrick researched ‘psychogenic polydipsia’ in detail. He found that it is a condition which has received little research and which is generally regarded as a ‘medical mystery’. 

In fact, several leading academics have suggested that the supposed ‘psychogenic’ basis might be a mistake and that the real mechanisms simply haven’t been identified yet.

When Patrick researched the earliest papers into the condition from the 1940s and 50s, he came across several intriguing patient case studies. 

Those patients had symptoms reminiscent of ME such as ‘aching everywhere’ and profound ‘weakness of the legs’. Among other reasons, this led Patrick to believe that, at least in many patients, what has always been termed ‘psychogenic polydipsia’ may have been a misreading of the biomedical thirst experienced in ME patients.

Patrick’s book challenges the psychogenic basis of ‘psychogenic polydipsia’ (also known as ‘primary polydipsia’) and instead maps out a model of ‘hypovolemic thirst’ which can explain the symptoms in organic terms. 

The book is called ‘The Myth of Primary Polydipsia: Why Hypovolemic Dehydration Can Explain the Real Physiological Basis of So-Called Psychogenic Water Drinking’. It is available on Amazon and from themythofprimarypolydipsia.com as a PDF download.

At its most extreme, this symptom can lead to hyponatraemia-induced coma and death. 

Despite this, the current diagnosis of ‘psychogenic water drinking’ offers only stigmatisation and no practical help. If ‘hypovolemic dehydration’ could re-explain these symptoms in organic terms, it would not only lead to much-needed medical help but also to greater awareness about the biomedical nature of ME among future medical students.

Patrick is looking for doctors/medical researchers who may wish to work on a hypothesis paper or other similar collaborations."

Rehydration Solution Options

From the Bateman Horne Centre (US) here

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 in some instances. 

Submission re Green Paper on Disability Reform by ME Advocates Ireland (MEAI)

New Submission Deadline - 31st July 2024

Green Paper on Disability Reform

The Minister for Social Protection in Ireland announced proposed radical welfare ouverhaul with the publication of the Government's Green Paper in September 2023. The Disability Green Paper is available to download and view under the heading 'Documents' on the Government page via this link.

Summary of Green Paper Proposals 

(see link to Easy Read further below)

There are three proposals included in this Green Paper:

1.The introduction of a new single scheme, the Personal Support Payment. This section introduces the key principles of the scheme which has three tiers. It sets out how the three tiers and the different payment rates of this new system would work.

People who are placed in tier 3 (moderate to high capacity to work) will be provided with more employment supports than people in the other two tiers. They will be required to take up training and employment offers that correspond to their capacity to work.

Payment durations will be established and linked to the anticipated duration of the person’s disability in tiers 2 and 3.

2. For people who work, a new Working Age Payment model will replace the current fragmented system of employment supports. Currently, people on a disability payment can either avail of an earnings disregard (Disability Allowance and Blind Pension), or can transfer to Partial Capacity Benefit (if they are in receipt of Invalidity Pension). This results in major differences between how mucha person can work and earn.

3. To raise the age of entry of Disability Allowance to 18 years of age and extend the payment of Domiciliary Care Allowance to 18 at the same time.

The existing Disability Allowance, Invalidity Pension and Blind Pension payments will be replaced with a new contributory and non-contributory Personal Support Payment. As with the State Pension, people will qualify for payment either based on contributory social insurance basis (funded by the social insurance fund) or on a non-contributory, means tested basis (funded by the Exchequer) Tiered approach of the Personal Support Payment Rather than assessing a person’s capacity to work on a two-option basis –that is, that a person is either fully capable or fully incapable of work –a tiered approach will be taken. 

This will reflect the levels of disability and capacity so that a person who qualifies for a Personal Support Payment will be assigned to one of three broad categories based on their capacity to take up work and the level of support they need.

The level assigned could be one of the following:

Level 1: High support –Very low capacity to work The person has a high level of incapacity and low capacity to work. This means they are very unlikely to be able to take up any kind of paid employment for as long as their condition persists and for at least 2 years.

Level 2: Medium support –Low to moderate capacity to work The person is assessed as having a disability that is expected to limit their capacity to work for at least 24 months. However, they may be capable of undertaking some types of work and durations of work –for example, part-time as opposed to full-time –but are not likely to be able to fully support themselves through paid employment alone for as long as their condition persists.

Level 3: Low support –Moderate to high capacity to work The person is assessed as having a disability that is expected to persist for at least 24 months. This means that they cannot do certain types of work activity (including the type of work they were doing before acquiring their disability). However, they may still be capable of taking up other forms of employment and to do many types of work activity. This makes it a realistic option for them to progress towards sustaining themselves through paid employment alone.

The Personal Support Payment rate will then be set at three levels based on this categorisation:

• Level 1: The payment rate will be aligned with the State Pension (Contributory) rate of payment. (This rate is currently € 265.30a week.)

• Level 2: The payment rate will be set at a level between the level 3 and level1 rate.(€242.65 a week)

• Level 3: The payment rate will be aligned with the current standard payment rate for Disability Allowance. (This rate is currently €220 a week.)

Green Paper Proposals Easy Read

 

"Compassion for those who are suffering has been replaced by a punitive, mean-spirited, and often callous approach apparently designed to instil discipline where it is least useful, to impose a rigid order on the lives of those least capable of coping with today’s world, and elevating the goal of enforcing blind compliance over a genuine concern to improve the well-being of those at the lowest levels of society.”

ME Advocates Ireland (MEAI) Green Paper Submission

ME Advocates Ireland (MEAI) is concerned about the adequate provision of state services, resources and welfare entitlements for people with Myalgic Encephalomyelitis (ME). 

Where services, resources and welfare entitlements are unavailable, inaccessible, or under threat of being taken away, ME Advocates Ireland (MEAI) aims to highlight these inadequacies in the hope that the situation is improved in favour of the person with M.E. associated illness and disabilities. 

We have responded to the recently published government Green Paper on Disability Reform with our submission by email on behalf of members of the M.E. community in Ireland.

We think that the Goverment's proposal is a reductive, regressive, brutal way to frame the lived experience and reality of life for our disabled citizens, and vehemently oppose the proposal by the Irish Government to categorize disabled people for the purposes of allocating social welfare payments. Please see our reasons as outlined in our submission.

Our completed submission is available here .

The full email details re the submission made by ME Advocates Ireland (MEAI) on 07/11/23 including the response from Government and any other updates on the matter are at the bottom of this page.

Continue below for sample submissions by us and others.