Paralysis in Myalgic Encephalomyelitis (ME) & the Dismissal of Paralysis by Medics & Others

 “Stop what you are doing right now and be prepared to lose all possibility, all plans, all intention, all the things you take for granted.” ~ Linda Crowhurst (2016)

 

 

Paralysis is a terrifying symptom that has often been reported in feedback from people with Severe Myalgic Encephalomyelitis (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.

Paralysis in ME can take over part of the body or the whole body, i.e., partial, or full body paralysis.

Paralysis is not treated as if it is part of ME, especially in Severe/Very Severe ME.

Paralysis, a recognised part of ME, is generally ignored, downplayed, or treated as not real.

 

Study on Paralysis in ME

"We conducted our own study, it shocked us when we discovered how many others also suffer from paralysis" 

~ Linda & Greg Crowhurst

In ‘Paralysis, a qualitative study of people with Severe Myalgic Encephalomyelitis' (August 8th 2013), a study on paralysis in ME, Greg and Linda Crowhurst state that ‘The responses were painfully familiar and shocking in the discovery that there are considerable others with very similar experience being ignored and neglected medically. Or not receiving adequate explanation’.

And state that ‘These responses highlight that the most severely affected can experience regular total body paralysis, partial muscle, limb and body paralysis, transiently during the day and /or totally, following sleep.’

The Crowhursts also state that ‘Paralysis can be occasional, repeated daily or weekly, is erratic and unpredictable, may be accompanied by severe to extreme pain, cannot be broken out of at will, is completely incapacitating and interestingly even some of those less severely affected, nevertheless experience some paralysis or ' get stuck '.’

The Crowhurst and Crowhurst Survey in 2013,’ also highlights that ‘Paralysis is a recurring experience in ME, with many common elements involved, although impacting erratically and variably. There is no excuse not to use it as a key symptom in definitions that are used to identify ME and would easily help to separate ME from chronic fatigue.’

 

See that Crowhurst study on Paralysis 2013 via link  here

 

Study on PEM in ME which includes feedback on paralysis- 'Assessment of Post-Exertional Malaise (PEM) in Patients with Myalgic Encephalomyelitis (ME): A Patient-Driven Survey' 

Leonard Jason et al study entitled 'Assessment of Post-Exertional Malaise (PEM) in Patients with Myalgic Encephalomyelitis (ME): A Patient-Driven Survey' shows that 29.4% with ME experience the symptom of paralysis/inability to move, based on an assessment of Post-Exertional Malaise (PEM) in Patients with Myalgic Encephalomyelitis (ME) where participants were asked to evaluate a list of symptoms that are exacerbated following physical and/or cognitive exertion.

‘Paralysis/inability to move 29.4% (451)’ , details from table 4. of a study Leonard Jason and others held. Table 4. here

Full study ''Assessment of Post-Exertional Malaise (PEM) in Patients with Myalgic Encephalomyelitis (ME): A Patient-Driven Survey'  here

 

Poll on Paralysis in ME

An informal poll entitled 'Have you ever experienced complete paralysis of a part of your body?' by Phoenix Rising in 2021 produced a similar percent to the Jason et al study where results suggest 27.9% of people with ME suffer intermittent paralysis.

See that poll here

Image by Greg Crowhurst

Personal Feedback about Paralysis from Patients with Severe ME
 

Paralysis is a terrifying feature that has often been reported in feedback from people with ME, from those with Severe ME in particular.

Paralysis in ME means the individual suffering the paralysis cannot feel and cannot move and has no choice about it. 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”.

(i) Feedback from a patient-advocate with Severe ME who has experienced full body paralysis in a hospital setting:

“When I first read Greg Crowhurst's earlier books I finally found that others experienced paralysis.

Mine is always triggered by an event, that is after seriously going beyond my boundaries.

I cannot open my eyes, move, speak but can hear, everything is sensitised, pain increases, my body will jump off the bed involuntarily if someone puts a cup onto a saucer, but I cannot create movement.

My dentist has witnessed it and calls it a neurological shut down. My extremities go cold, heart rate slows and BP drops.  My core is hot & will cause concern as the temp reaches 37.6 - but no one feels the freezing limbs.

I can think but cannot create speech.  I ‘speak’ to myself in my head about what the nurses/ED staff don’t understand as they do the opposite of what I need, shouting at me ‘Christine, Christine, can you hear me, open your eyes if you can hear me’ - I can hear them, they are hurting me by shouting and touching the bed, but I cannot respond.

‘She’s in a coma, her eyes are flicking (as I try with my soul to open my eyes but only the lashes flicker as the only result for the immense effort) and I hear the proclamation ‘she’s having an epileptic fit’ - no, I’m just trying to open my eyes.

The sheer absolute helplessness of knowing that this will pass but unknowing healthcare staff and Doctors will, unknowingly, inflict more pain and discomfort on my tortured body before, finally, I am able to communicate my needs.

It takes about four hours before I can create speech, actual spoken words.  I think them, plan them, then when I have the energy to push a whispered word from my mouth, a beyond endurance effort to reach out and explain my need, it is not heard or is dismissed.

If, a massive if, someone will take my hand and ask me a question requiring a ‘Yes’ answer, ‘Christine can you hear me?’ - quietly and close to my ear, and if they give me time to get my brain to send a message to my finger, a brain which has shut down the pathways which create movement, and if I use an immense effort to create a signal to move I can respond by a slight fingertip movement, but the person asking the question needs to be sensitive to the slightest fingertip movement as that is all I have and it drains me.

The energy used to create that whisper of communication has exhausted me and I have to wait to recover in order to try again, to try to communicate the paralysis to an unhearing hospital.

It has taken me several years to have a Care Plan in place which describes the paralysis so that now I am put on IV fluids, am given sedation so I rest & the energy which is focused solely on the essential organs is not further drained by the environment around me.

Sometimes the paralysis only affects my limbs & I can speak, slowly to explain my needs, but I still need to explain why IV fluids will aid my recovery - they do not understand.

It has taken years of torture to arrive at a situation where my needs are on paper & those who know me in the hospital are aware & prepared.

If I met staff new to me, who have not read the Care Plan as they know best, then I will enter the same living hell.

I am lucky, hell passes.

It takes weeks to recover from the onslaught, maybe months to regain an earlier baseline, if I do, and I do reach a higher level of function which makes me one of the lucky people with ME as I can engage in life in those better times.

Dare I think of a time when hell doesn’t pass? - no, I don’t think I’m strong enough to contemplate such a state, and I am strong, incredibly so, but living in that horrendous less than life state is a situation beyond my contemplation.

Once, I asked one unhelpful Consultant why no one thought of doing an MRI to see what was happening - the response, ‘we’d have to induce paralysis and why would we want to do that?’!

There is no interest in identifying what the problem is and yet they are determined to dismiss it as psychological.

The hospital dentist last time it occurred with him, non-hospital dentists will not touch me, he took BP & HR prior to, during and after the dental work, which showed the rising then sudden drop and holding to low readings.

The ambulance came to take me across the hospital grounds to ED & I assume female + dentist = panic attack and said so.

The dentist showed the BP & HR readings which non-plussed them & had them scratching their heads.

In ED they started asking the dentist about ME as they knew nothing about it!

Why does it take these extremes to pique the interest of two healthcare staff? - why isn’t there an implementation process to hear and respond in a way which solves the problems we face?

I am lucky in that it [paralysis] is now recognised, but it has taken years of fighting during lots of admissions.

The disbelief and dismissal are dreadful.

I remember reading Greg’s [Crowhurst] book some years ago and thinking, finally I am not alone, there are others out there.

Different people seem to experience paralysis in different ways, but doctors do not seem to even know it is a possibility.

I think we need to ask worldwide and try to create a collection of paralysis experiences, and attitudes!

It took me several times of paralysis happening in hospital for them to acknowledge that it is a ‘thing’ in me.  Then years to get them to have formalised processes to manage it.

But as an accepted part of ME? - not a chance.

The only reference I saw in ME documents was in the long version of the Canadian Consensus Criteria 2003, and only a line.

I did two treadmill stress tests in 2012 & 2013, the first one lasted 90 secs, and the next one 60 secs before the staff stopped me and my heart rate soared into the 160s.

Obviously heart rate increased radically and then I slipped into paralysis.

There is usually a delay, but I know it is coming and that I have maybe 10-30 mins to warn someone.

Another time I made a cup of tea with the Occupational Therapist and stood to do it, I could feel that I had pushed too far, it was too hard to hold my head up and I was taken back to the ward, put into bed where I slid into paralysis.

Cat Scan/MRI dye & angiogram contrast does the same thing, but I can do a MRI without the dye.

So increased heart rate for too long or past a threshold triggers it but so do other things.

Last year I had a General Anaesthetic, and they took the opportunity to do a procedure and some minor dental work - I came out of the anaesthetic into paralysis.

The anaesthetist used short acting drugs and was fully aware that I might be out of anaesthetic but paralysed.

I was looked after brilliantly and was in recovery for four hours whilst they monitored the paralysis, fed me pain meds & waited until I could whisper before sending me back to my room.

The huge difference in knowing we had planned for this, that the anaesthetist and ward staff knew what to look for and how to manage me meant my recovery was faster. I was in hospital for four weeks - the previous procedure was a two-month admission as the care & awareness wasn’t in place.

It just shows what can happen when medical staff do listen and do work with patients as equal partners .......

 ....... but it took years of fighting with the hospital and being dismissed, being told it was psychological - the usual stuff, before they finally listened, and we planned my care together.”

 

Many thanks to CF, severe ME patient, for your personal story and for sharing your difficult experiences.

 

 

(ii) Feedback from a person with Severe ME who experiences recurring full body paralysis:

 

‘A POEM ABOUT RECURRING PARALYSIS 

Every single paralysis is a torment.

They do not get easier to bear

Just because I have had so many.

Decades of continuing, ongoing,

repeated daily paralysis

Does not get easier to bear believe me.

Saying the word does nothing to convey

the horribleness of the experience,

The horrendous suffering

The destruction of a life.

Every single noise that catches me

Forces me away from the outside

Forces me down into unutterable, tormenting, sensations

And pain beyond description.

Please do not get complacent

When hearing me say that I am paralysed yet again.

I am struggling to bear it.

I am distressed by it.

I am tortured by it.

I am weakened, removed, torn from the world

Blanked from memory - both my own and others.’

Many thanks to Linda Crowhurst, very severe ME patient, for your feedback and for sharing your difficult and horrenduous experiences.

Important notes in the event that a patient enters a paralysis/crash phase 

 

The patient (person with severe ME) may become paralysed and unable to inform the HCP 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

 

(the above sample vital signs and advice is a portion of the full document)

 

 

More on the above information about crash/paralysis management 

 

Please see the rest of the document on pages 6, 8 and 9 via the document here 

Image of Linda Crowhurst, person with severe ME by her husband & carer, Greg Crowhurst

 We Need To Know More!

There is a small amount of subjective evidence about paralysis in ME as evidenced in the few studies done, and in the patient feedback to ME Advocates Ireland (MEAI) and elsewhere, but we need to know:

Who is treating or taking paralysis seriously as a symptom especially in Severe ME? 

Who is researching paralysis in ME?

 

Who is testing paralysis in ME to see if it is a treatable feature?

 

Who is testing paralysis in ME to see if it is a treatable comorbid illness? 

Greg Crowhurst answers some of those questions:

"Paralysis in Myalgic Encephalomyelitis (ME) has been ‘dismissed, ignored, downgraded, neglected, patronised, misrepresented and overlooked’. It is hard to imagine that given the horrors of paralysis in ME that this is the situation, it is even more difficult to reconcile the focus on fatigue and the use of fatigue related labels and titles that are used to refer to Myalgic Encephalomyelitis (ME), i.e., CFS, ME/CFS, CFS/ME, Chronic Fatigue, and Fatigue, given the physically tormented suffering of Severe, Very Severe and profound ME. Using ‘fatigue’ as a name of a disease. despite the horrendous symptoms such as full body paralysis, gives it exclusive emphasis and has been the most confusing and misused criterion." - GC

Further Information on Paralysis

• Greg and Linda Crowhurst outline the problems that exist re care and research around paralysis and express their concern that paralysis is not treated as if it is a part of ME in a post entitled 'Channelopathy: an important issue for those with Myalgic Encephalomyelitis', please read that via this link.

• Blog post about paralysis by Greg entitled 'Beyond Catastrophic: Paralysis in Severe ME' which includes information on the triggers of paralysis in severe ME here.

 

• An extract from his book "More Notes For Carers", by Greg Crowhurst: ‘Contemplate Paralysis if You Can’ describes paralysis in great detail- link 

Advice from Greg, Carer to His Wife Linda who has Very Severe ME 

 ‘It is very important that people do not just accept that they are paralysed because of ME, where it is barely recognised as a symptom and important they ask for a much better explanation and testing to make sure there is no rare disease, for example, Mitochondrial Disease, Hemiplegic Migraine, Periodic Paralysis, to name just a few. Also push for recognition of the impact of paralysis on your daily life and an appropriate level of understanding so that it is not ignored from a medical and a care perspective.’ 

As with other symptoms in ME it is important to try to find out the underlying physiological cause of symptoms such as paralysis; there may be a root cause that is treatable, or testing may bring insight into how to manage or understand the paralysis disorder.

Anonymous Feedback

 

        I am so relieved to find such a good article on this subject, thank you. It has been my most frightening symptom, and at the same time the most ridiculed. To my neurologist it was proof of my hypochondriac nature; after all, it probably was just a panic attack or attention seeking. And at this moment, my friend, who is severely ill, faces forced admission in a psychiatric ward. Her paralysis is also regarded as part of her "mental illness".

Because of all this, I have stopped seeking medical support. I have instructed my children, if this happens, to leave me quietly by myself in a safe environment (Mostly I am in bed anyway) and I lie there, trying to turn the event into a meditation. Just waiting for it to pass. I always tell myself it's my body's way of energy saving and it shuts everything down that is not necessary for survival. This helps me to stay calm and it passes more quickly. No probing and stabbing needles in me while I am in this state!

 

"Paralysis in Myalgic Encephalomyelitis (ME) has been ‘dismissed, ignored, downgraded, neglected, patronised, misrepresented and overlooked’. It is hard to reconcile the focus on fatigue and the use of fatigue related labels and titles that are used to refer to Myalgic Encephalomyelitis (ME), i.e., CFS, ME/CFS, CFS/ME, Chronic Fatigue, Fatigue given the physically tormented suffering of Severe, Very Severe and profound ME. Using ‘fatigue’ as a name of a disease gives it exclusive emphasis and has been the most confusing and misused criterion."

 

Sincere thanks to Greg and Linda Crowhurst for your time and efforts highlighting and sharing information about one of the most horrendous symptoms in ME, and for your work bringing attention to paralysis as a neglected symptom of ME.

 Many thanks also to severe ME patients for your feedback. 

 

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