Tuesday 21 February 2023

Communications Difficulties with Severe Myalgic Encephalomyelitis

Over several weeks I composed a letter to the social-worker who has taken over my case, as they wanted to know about my abilities to communicate.


Manager Trafford ASS

27th December 2022 - 23rd January 2023

Dear H.,

Issues with Communication

Conditions & Symptoms Pertinent to Communication

Refer to my spreadsheet “[redacted]”: here I have listed the medical issues effecting my ability to communicate in the order they appear in the aforesaid document and using the same numbering for ease of cross-referencing. The code after the entry-number is the WHO ICD-10 coding (with a single exception in bold). The referenced spreadsheet places topics in the order they appear in WHO ICD-11 to help future-proof the document as codings move from the older to newer system. Every issue listed on the spreadsheet has a link to further information: firstly, where available, to the NHS website; then to [redacted]. If the reader is not familiar with a specific medical issue these links will quickly lead to relevant information.

Under each area of communication or factor in communicating, I have firstly listed the numbers relating to my spreadsheet. Then I have expanded these into a very brief description of what is effected or how a matter is effected.

I have included various medical issues that ostensibly are not directly related to communication. These I have listed with the label PAIN. I am in pain constantly. Levels fluctuate constantly. Sometimes my experienced pain is such that it makes concentrating on anything else - including communication - impossible. On such occasions I will come across as extremely grumpy, as the sheer effort to communicate - if at all - is an additional source of pain. On other occasions the pain is manageable and I am able to communicate effectively, within the confines of my known limitations.

The level of tiredness, of fatigue, is another pertinent factor. Again my experience fluctuates from rare days of clear-headedness to total exhaustion and a resultant complete inability to do anything other than lie, breathe & exist despite the pain.


Energy-Limiting Chronic Illness aka ELCI

Both the Myalgic Encephalomyelitis and the Fibromyalgia are ELCIs. Due to the fatigue resulting from the pain from my various arthritides, they also can be viewed as ELCIs.

“Energy-limiting chronic illness (ELCI) is an umbrella term to describe long-term health conditions in which severe fatigue – or rather energy impairment – is a key disabling feature.”

( https://chronicillnessinclusion.org.uk/2021/04/28/what-are-energy-impairment-and-elci/#more-781 )

“We use the umbrella term ELCI for conditions where energy impairment is a key feature. These include fibromyalgia, ME/CFS, lupus and long Covid, as well as a range of neurological, musculoskeletal, auto-immune and respiratory diseases.”

( https://chronicillnessinclusion.org.uk/our-work/elci-energy-impairment-disability/ )

UK Parliament POSTnote 689 (q.v.) on ‘invisible disabilities’ includes references to “energy-limiting conditions”. I have not yet (skim-)read this document. However, one can say UKgov acknowledges the term.

My conditions fluctuate to such an extent that there is little regular pattern from a daily or even day-to-day perspective. However I can generalise over say a fortnight. The amount of energy I have to expend is severely limited due to the excessive energy-impairment. I reference ‘days’, but for me that only means up to three hours (mostly much less) on any given day.

Out of 14 days:

2 days are taken for bathing, in hot salt-baths to ease my arthritides & relax muscles, by which I mean help them lose their quotidian tightness for a few hours. The result is pain-relief for a similar time too.

4 days for ordering online and dealing with food & household shopping.

3 days for going downstairs for up to two to three hours and then recovery.

That leaves 5 days for dealing with other matters AT MOST. Usually I only get one or two days to deal with other matters. And I iterate only for a very short time - less than max. three hours. These hours are also NOT comparable to those of a healthy person: my cognitive abilities function more slowly and less efficiently. I cannot deal with more than one issue at a time, so have to prioritise. For example, whilst writing this letter, I have been unable to deal with an issue with my bank, which will need considerable thought and typing idc nor a complaint to my food-provider at Christmastime.


ICD-11: 6A00-6E8Z Mental, behavioural or neurodevelopmental disorders

11.   F98.5     Stammer/Stutter

12.   F32        Depression

13.   F41.1     Anxiety

14.   F40.2     Phobias incl. Telephobia

ICD-11: 7A00-7B2Z Sleep-wake disorders

16.   G47.0    Insomnia

17.   G47.1    Hypersomnia 

18.   G47.9    Unrefreshing Sleep

ICD-11: 8A00-8E7Z Diseases of the nervous system

20.   G43.8    Retinal/Occipital Migraine

21.   G43.1    Classic Migraine

22.   G43.D1 Abdominal Migraine 

23.   G44       Cluster Headaches

24.   M54.81  Occipital Neuralgia 

26.   G64       Peripheral Neuropathy/Polyneuropathy

28.   R29.8    Temporary Paralysis 

31.   G93.3    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: not to be confused with Chronic Fatigue which is a symptom not a disease.

32.   G99.2    Myelopathy/Myelitis/Loss of Fine-motor Skills

ICD-11: 9A00-9E1Z Diseases of the visual system

36.   H53.1    Photophobia

37.   H53.1    Temporary Vision Loss/Episodic Blindness/Transient Visual Loss

ICD-11: AA00-AC0Z Diseases of the ear or mastoid process

38.   H65-95  Otitis

39.   H60.5     Eczema of Ear-canal

41.   H91        Partial Hearing-Loss, temporary: due to hyperacusis &/or tinnitus &/or M.E.

42.   H93.2     Hyperacusis/Noxacusis

ICD-11: FA00-FC0Z Diseases of the musculoskeletal system or connective tissue

62.   M16       Coxarthrosis due to Osteoarthritis/OA of L hip

63.   M17       Gonarthrosis due to Osteoarthritis/OA of knees

64.   M15.9    Arthritis of fingers

65.   M15.9    Arthritis of feet

66.   M15.9    Arthritis of ankles

67.   M15.9    Arthritis of hands & fingers

68.   M47       Spondylosis due to Osteoarthritis/OA of lower spine

70.   M94.0    Costochondritis

ICD-11: MA00-MH2Y Symptoms, signs or clinical findings, not elsewhere classified

71.   R49.1    Post-/Exertional Aphonia/Loss of Voice

72.   R49.0    Post-/Exertional Dysphonia/Hoarseness

73.   R48       Dyscognition/Brain-fog/Fibro-fog

75.   F41.0    Panic-attacks

77.   R20.8    Hyperalgesia / Allodynia

88.   R48.2    Post-/Exertional Apraxia/Loss of Co-ordination

89.   R48.0    Acquired Dyslexia

90.   R48.0    Post-/Exertional Dyslexia

91.   G31       Aphasia/Anomia/Anomic Aphasia/Dysnomia

92.   R48.8    Post-/Exertional Dyscalculia

93.   H53       Impaired sight: blurred vision; inability to focus/Accommodative Dysfunction

94.   H93.1    Tinnitus

95.   R06.0    Dyspnœa, post-/exertional /Shortness of Breath

101. R53       Exhaustion/Post Exertional Malaise

103. M79.7   Fibromyalgia/FM/FMS

104. M79.1   Myalgia/Polymyalgia

105. M79.2   Neuralgia (jaws/teeth/cheeks)/Trigeminal Neuralgia

106. G44      Common Headaches

ICD-11: VA00-VC50 Supplementary section for functioning assessment 

108. VV03   Memory issues, incl. poor working-memory

ICD-11: X… Extension Codes

112. R59.0    Lymph-node Hardness/Tenderness (mainly throat, underarms, groin/thigh)



11-14; 16-18; 20-24 (PAIN), 28 & 31; 41-42; 62-70 (PAIN); 71-73, 75, 77 (PAIN), 91-92, 94-95, 101, 103, 104-106 (PAIN); 108; 112.

Physiological, Mental & Emotional Factors Inhibiting Speech

11          stammer/stutter when stressed &/or fatigued

12-14     unwillingness to communicate due to these various factors

16-17     lack of sleep &/or poor quality sleep leading to cognitive issues

18          asleep when communication desired by another

20-24     PAIN

28          paralysis

31          Myalgic Encephalomyelitis/Chronic Fatigue Syndrome 

41-42     difficulties in hearing

62-70     PAIN

71-72     voice issues

73           inability to concentrate & process thoughts

75           too stressed + unable to concentrate & think clearly

77           PAIN

91           difficulty in word-finding

92           difficulty in using numbers (time, money, etc.)

94           difficulty in hearing

95           breathlessness

101         physical, mental &/or emotional exhaustion

103         Fibromyalgia/FM/FMS

104-106  PAIN

108         fluctuating cognitive issues, mostly severe

112         physical swelling (at its worst visible) & resultant PAIN

Issues & Practical Solutions

If I am unable to speak but otherwise able, I one-finger type on a computer to communicate my needs.

Co-incidentally, whilst drafting this very document, I was again reminded that one can purchase pre-printed cards with some basic information &/or basic vocabulary. I shall hopefully get around to purchasing some in due course, as, for example, they would be useful were I to be hospitalised.

See also Writing below.

Item 22 in the “[redacted]” is entitled “Dyscognition (brain-fog, memory-loss)”: the note reads…

There are times when Colin is brain-fogged, which can cause dyslexia, dyspraxia and a loss of vocabulary for everyday items and names of even folk he knows well. This is a symptom of his conditions. Worry not!

Item 40 in the “[redacted]” is entitled “Memory“: the note reads…

Colin generally has no issue with long-term memory, except when tired. However, his short-term memory can be exceptionally poor. For this reason, carers need to prompt with precise questions rather than generalised and open questioning. For example, “Do you need anything?” will never elicit a positive response. Ask, “Do you need to clean your teeth.” See also Dyscognition.

Item 74 in the “[redacted]” is entitled “Telephones”: the note reads…

Colin does not speak on telephones due to phobia. Occasionally the carer may be asked to make a call to book a medical appointment or a taxi-cab to ferry Colin to such an appointment.

Item 80 in the “[redacted]” is entitled “Voice-Loss“: the note reads…

Colin occasionally loses his voice totally and regularly becomes hoarse. Medical attention is not required, they are symptoms of his conditions.

Obviously calling out to me may not receive a desired response if my voice &/or throat are badly effected. This is not a sign of being ignored and ought not to be considered an affront.


Listening & Hearing

16-18; 20-24 (PAIN) & 31; 38-39; 41-42; 62-70 (PAIN); 73, 75, 77 (PAIN); 94; 103, 104-106 (PAIN).

Physiological, Mental & Emotional Factors Inhibiting Listening & Hearing

16-17     lack of sleep &/or poor quality sleep leading to cognitive issues

18          asleep when communication desired by another

20-24     PAIN

31          Myalgic Encephalomyelitis/Chronic Fatigue Syndrome 

38-39     ear issues reducing ability to hear

41-42     difficulties in hearing

62-70     PAIN

73           inability to concentrate & process thoughts

75           too stressed + unable to concentrate & think clearly

77           PAIN

94           difficulty in hearing

101         physical, mental &/or emotional exhaustion

103         Fibromyalgia/FM/FMS

104-106  PAIN

Issues & Practical Solutions

Item 48 in the “[redacted]” is entitled “Noise-Level“: the note reads…

Colin can be extremely hypersensitive to noise levels. He would appreciate carers speaking softly whenever possible.

Due to the hyperacusis (42. in [redacted]), not speaking softly is equivalent from my perspective to being shouted at.

A mixture of hyperacusis and sensation-overload (see below) mean I am rarely able to listen to the radio or music. When I do so it is rarely for an extended period.

On the occasional viewing of television (not in the manner in which a healthy person would, but in multiple segments) or a DVD, I turn down the volume to as low as possible or, if able to read, switch to subtitles.

I am often found sporting noise-cancelling head-phones in an effort to reduce sensory-input. Yet another reason why calling out rather than actually approaching me may not receive a response.




16-17, 18; 20-24 (PAIN) & 31; 36-37; 62 -70 (PAIN); 77, 93, 101, 103, 104-106 (PAIN).

Physiological, Mental & Emotional Factors Inhibiting Vision

16-17     lack of sleep &/or poor quality sleep leading to focussing issues

18          asleep when communication desired by another

20-24     PAIN

31          Myalgic Encephalomyelitis/Chronic Fatigue Syndrome 

36-37     eye issues reducing ability to see

62-70     PAIN

77          PAIN

93          eye issues reducing ability to see

101         physical, mental &/or emotional exhaustion

103         Fibromyalgia/FM/FMS

104-106  PAIN

Issues & Practical Solutions

The past couple of years my vision has been exceedingly variable day to day and even hourly on many days. I have to keep swapping spectacles &/or moving objects nearer/away as necessary. My ophthalmologist is aware of my issues and the reasoning for missing regular eye-tests for the past two years. Once my vision stabilises I shall endeavour to have a fresh eye-test.

Item 5 in the “[redacted]” is entitled “Blindness”: the note reads…

Colin occasionally experiences extreme visual disturbance. This is a symptom of his conditions. Hospitalisation is unnecessary.

Item 60 in the “[redacted]” is entitled “Photophobia”: the note reads…

Colin experiences frequent pain due to light. Never open the blind nor turn on a light in his room without prior warning and permission.

Due to the photophobia I often wear sunglasses in my bed-cell, even with the blind down and the lights turned off.

Due to sensation-overload, I am rarely able to view a previously unseen tv-programme: I cannot cope with fast-motion imagery, flashing lights, etc. Due to generally limiting my televisual viewing to previously-seen programmes or genres that lack action, I prevent the side-effects. I close my eyes and simply listen to programmes on days where my hearing is unaffected, but my vision is. I also frequently keep my eyes closed when I have visitors in order to reduce stimulatory in-put.

Fast movements whether on a screen or real-life can cause me to become dizzy &/or nauseous, so it is important that visitors move about calmly in my presence.

If I am sporting my head-phones and sunglasses, it means I am experiencing an especially difficult period. This of itself ought to be an indicator to others to communicate as little as possible.



28 & 31; 73, 75, 89-90, 92; 108.

Physiological, Mental & Emotional Factors Inhibiting Reading in Addition to Vision

28           paralysis 

73           inability to concentrate & process thoughts

75           too stressed + unable to concentrate & think clearly

89-90      Dyslexia

92           Dyscalculia 

108         fluctuating cognitive issues, mostly severe

Issues & Practical Solutions

I struggle to read standard-sized fonts and small fonts are nigh impossible. I do have a magnifying-glass. However, using it always makes me nauseous, so I only use if absolutely necessary, e.g. for reading prescription labels.


My main form of entertainment & of socialising is via social-media (SM). Sharing small snippets of text &/or imagery. I can cope on the majority of days with inane posts. If I succeed in posting something that raises awareness, for example on one of my health-conditions, it gives me a sense of believing I might be helping others.

SM also is my main entry to support whether to a health query or from my friends of yore.

I chat via text using Messenger with the vast majority of friends & acquaintances. With [redacted], my housemate & ex long-term partner, and with [redacted], my good friend & last ex-boyfriend, I video-chat on good days. 

Books & Newspapers

For several years now I have been unable to read a novel or a broadsheet newspaper. I have had to turn to webcomics for my reading pleasure, as - just like a child learning to read - I am able to use the images to determine meaning from text. On very good days I can read a medical article or a medium-length newspaper or magazine article and be able to digest some of the contents. Mostly I have to skim-read or just read an abstract or a key-points chart.


My preferred form of communication is email as (i) I can use dark-mode thus reducing photophobic pain, and (ii) I can enlarge the text to a size which I am able to read.

Due to typically only having one or two AT MOST clear-headed days per month, emails are rarely read. Indeed these past couple of years, I have only been able to deal with them every two to four months in batches (the last such occasion was September 2022). I have hundreds of unread emails, but have to assume anyone needing to contact me urgently will send a reminder.


I have not read any letters for the past few years. [Redacted], my housemate, was reading them on my behalf, just bringing to my attention any matter of genuine importance. However, since he commenced his latest position, he has been relinquishing as many of the unsolicited carer-tasks thrust upon him. Additionally he simply does not have the time any more to do my tasks as well as his own.

If letters are sent to me that require my actual attention I need the following as a minimum: (i) sans-serif font; (ii) font size 16 or larger; (iii) printing on one side of the page only unless thick paper used, otherwise the text appears blurry.


Going forward I am going to need some kind of advocate who can read and deal with the mail, both letters & emails. I shall also need someone to take charge of financial matters, as again [redacted] has been dealing with these thus far, but wants to stop doing so. I have as much as I can on direct-debit or standing-order to try to avoid late payment.


32; 64, 67; 88.

Factors Inhibiting Writing in Addition to Vision + Reading

32           loss of Fine-motor Skills

64           Arthritis of fingers

67           Arthritis of hands & fingers

88           loss of co-ordination

Issues & Practical Solutions

Due to my various medical conditions, inter alia the arthritides, I can no longer write conventionally. However a decade or so ago I discovered a work-around for my signature. I now use oversized pens which I can grip with my whole hand on very good days. Nevertheless, extended writing in this manner is not possible for me.

On my good days I am able to one-finger type slowly. It takes hours to type a typical email-letter, days (non-consecutive!) for longer missives such as this very letter. Obviously not only does my body give up due to pain & fatigue, my brain also gives up after writing at length - more than a paragraph or so. Many days words are beyond my capability to read/write, so I look at imagery, e.g. Instagram, Tumblr, etc.

Additionally, my anxiety kicks in when writing to anyone I do not know well. My Fitbit records dramatic increases in heart-rate, over my safe threshold (to reduce the likelihood of crash or relapse). This means I can usually only respond to one or two emails at a time.

See also “Social-Media” under Reading above.


Cognitive Issues

12-14; 16-17; 20-24 (PAIN), 31; 62-70 (PAIN); 73, 75, 77 (PAIN), 90-92, 101, 103, 104-106 (PAIN); 108.

Factors Effecting Cognitive Issues:

12-14     factors strongly effecting clear-thinking

16-17     lack of sleep &/or poor quality sleep leading to cognitive issues

20-24     PAIN

31          Myalgic Encephalomyelitis/Chronic Fatigue Syndrome 

62-70     PAIN

73           inability to concentrate & process thoughts

75           too stressed + unable to concentrate & think clearly

77           PAIN

90           difficulty reading

91           difficulty in word-finding

92           difficulty in using numbers (time, money, etc.)

101         physical, mental &/or emotional exhaustion

103         Fibromyalgia/FM/FMS

104-106  PAIN

108         fluctuating cognitive issues, mostly severe

Issues & Practical Solutions

I have various conditions/symptoms that militate against clear-thinking. In [redacted] provided to both Trafford social-services and the Trafford Council Re-ablement Team, I provided the following information: see items on “Memory” & “Dyscognition” within the “[redacted]” document, as referenced above (under Speech).

In short, I have severe issues with ‘active-memory’: if I am given meds to take, I need to be watched to ensure I take them and do not simply put them down. I do know that I need to take them, but in the moment I completely forget. It is well known that many if not most pwME suffer to varying degrees with this aspect of recall. I have severe M.E. and thus might be expected to have more severe problems in recalling actions etc. This issue of poor active-memory is the main reason why prompting devices are inappropriate - for they cannot ensure an action is taken!

Typically, although not invariably, over the past two decades plus, I am more cognitively aware approximately 18.00-19.00 to 21.00-22.00 depending on season, weather, etc. During this period I concentrate on eating my main meal of the day. I have difficulties in co-ordinating cutlery/vessels to my mouth, so dining of itself becomes a taxing activity. Generally after waking, whether after the night or a nap, I am very groggy for quite some time. Thus, a carer waking me at 16.00 (or previously at 11.00) is not going to obtain much sense from me until I have my bearings. This latter can take a couple of hours or so.

Trafford social-services have been made aware repeatedly. However, they insist on turning up when I am very unlikely to be in a position to know what they want and unable to remember much if anything of such encounters. The social-workers invariably think they know best and ignore this. In 2020, social-workers turned up in the morning and I lodged a formal complaint. Obviously it was ignored, as in 2022, yet again, they turned up earlier in the day. I repeatedly had to ask them to leave, but they insisted on continuing to put question after question. This was & is totally inappropriate behaviour towards someone with Severe M.E. - refer to the NICE guidance below.



“Hypersensitivity and Sensory Overload

Sensory overload may be linked to hypersensitivity, which is believed to be a core mechanism of FMS [Fibromyalgia - which I also have] and ME/CFS. It means that our bodies react strongly to all kinds of input – noise, bright or flashing lights, crowds of people, strong smells, a chaotic environment, or multiple things competing for your attention.”

( https://www.verywellhealth.com/sensory-overload-in-fibromyalgia-and-chronic-fatigue-716021 )

Sensory overload or overload phenomenon is a neurosensory symptom of myalgic encephalomyelitis which is recognized in the International Consensus Criteria primer and the earlier Canadian Consensus Criteria for ME/CFS.”

( https://me-pedia.org/wiki/Sensory_overload )

This becomes even more extreme when fatigue is also added to the mix.

“They [pwME &/or pwFM] may be entering a state of body-mind shutdown where even basic communication is difficult.”

(Via themighty.com)

The document “[redacted]” was compiled by myself over several years to help reduce repeated - thus unnecessary - inquiries. This then means my limited energies are not used up thoughtlessly and needlessly. It also means that additional stresses are not placed on me, my health & well-being. However, it does mean any type of carer, health- or support-worker needs to have access to the spreadsheet and needs to actually refer to it as required.

My housemate does not have my health conditions and he too gets stressed out by carers making the same inquiries repeatedly, especially where the information has been provided previously. An example would be asking where to find a plate: details are provided in [redacted]; common-sense ought to mean that carers open kitchen-cupboard doors and search for themselves. And so forth.

It ought to be noted that since the Re-ablement Team ceased their visits, the number, duration & degree of my migraines have dramatically reduced in line with the reduction in stress caused by for example their over-questioning & sensory-bombardment. 

More information on hypersensitivity to stimuli is referenced in the NICE guidance quoted below.


Social Contact

Prior to Trafford Council’s Re-ablement Team taking over my care-support, their reducing my care-support despite obviously requiring far more than was previously offered, the dangerous & unhealthy reduction in hydration & feeding and the resultant deterioration in my health (Fitbit stats; the de facto increase in being bedridden from 85% to c.99%; and, the reduction in my ability to go downstairs back up this assertion) and so on, I used to be able to:

Have visits from neighbours/friends - now reduced to [redacted] only (approximately fortnightly);

Go to visit neighbours/friends - now reduced to [redacted] only (3 times in 2022) & annual EUROVISION [redacted];

Attend church services every 3-4 months - now stopped totally.

Have intimate visits - now stopped totally (none in past 2 years or so).

I hope that appropriate levels & better planned social-care could result in my regaining more abilities & energy leading to increased social contact.


NICE Guidance NG206

For ease of reference I reproduce below the whole of section 1.17: 1.17.0 - 1.17.7 “Care for people with severe or very severe ME/CFS” as most of these parts are either directly or indirectly relevant to communication. The highlighting in bold is mine.

“This section supplements the rest of the guideline with additional considerations for people with severe or very severe ME/CFS.

Awareness of severe and very severe ME/CFS and its impact

Also see the main section on principles of care for people with ME/CFS.

1.17.1 Be aware that people with severe or very severe ME/CFS may experience the following symptoms that significantly affect their lives, including their mobility, emotional wellbeing and ability to interact with others and care for themselves:

severe and constant pain, which can have muscular, arthralgic or neuropathic features

hypersensitivity to light, sound, touch, movement, temperature extremes and smells

• extreme weakness, with severely reduced movement

reduced ability or inability to speak or swallow

cognitive difficulties that limit the person's ability to communicate and take in written or verbal communication

sleep disturbance such as unrefreshing sleep, hypersomnia and altered sleep pattern

• gastrointestinal difficulties such as nausea, incontinence, constipation and bloating

neurological symptoms such as double vision and other visual disorders, dizziness

• orthostatic intolerance and autonomic dysfunction, such as postural orthostatic tachycardia syndrome (POTS) and postural hypotension.

1.17.2 Recognise that symptoms of severe or very severe ME/CFS may mean that people:

need a low-stimulus environment, for example a dark quiet room with interaction at a level of their choice (this may be little or no social interaction)

• are housebound or bedbound and may need support with all activities of daily living, including aids and adaptations to assist mobility and independence in activities of daily living (for example, a wheelchair)

• need careful physical contact when supported with activities of daily living, taking into account possible sensitivity to touch

cannot communicate without support and may need to choose someone to be their advocate and communicate for them

• are unable to eat and digest food easily and may need support with hydration and nutrition (see the recommendations on dietary management and strategies)

have problems accessing information, for example because of difficulty with screens, sound and light sensitivity, headaches affecting their ability to read, or brain fog affecting their concentration.

1.17.3 Personal care and support for people with severe or very severe ME/CFS should be carried out by health and social care practitioners who are:

• known to the person and their family or carers wherever possible

• aware of the person's needs.

1.17.4 Risk assess each interaction with a person with severe or very severe ME/CFS in advance to ensure its benefits will outweigh the risks (for example, worsening their symptoms) to the person. For people with very severe ME/CFS, think about discussing this with the person's family or carers on their behalf (if appropriate), while keeping the focus of the engagement on the person with ME/CFS.

Assessment and care and support planning by an ME/CFS specialist team

Also see the main section on assessment and care and support planning by an ME/CFS specialist team.

1.17.5 Offer home visits to people with severe or very severe ME/CFS to carry out their holistic assessment and develop their care and support plan.

Access to care and support

Also see the main section on access to care and support.

1.17.6 Service providers should be proactive and flexible in delivering services to people with severe or very severe ME/CFS, who may have particular difficulty accessing services and articulating their needs. This could include home visits, online or phone consultations, supplying written communication, and supporting their applications for aids and appliances.

Hospital care

1.17.7 When planning hospital care for people with severe or very severe ME/ CFS:

• discuss with the person (and their family or carers, as appropriate) what to expect when they come into hospital

• aim to minimise discomfort and post-exertional malaise during transfer to hospital, for example by planning the route in advance, avoiding noisy areas and admitting them straight to the ward on arrival

• discuss the person's care and support plan with them, including information on comorbidities, intolerances and sensitivities, to plan any reasonable adjustments that are needed

  • aim to provide a single room if possible
  • keep stimuli to a minimum, for example by:- seeing them one-to-one
  • using calm movements and gestures
  • not duplicating assessments
  • being cautious about the pressure of touch 
  • keeping lights dimmed

- reducing sound

- keeping a stable temperature

- minimising smells.”


I am uncertain what you actually required in relation to my abilities & inabilities to communicate. I have endeavoured to provide a detailed explanation as to what areas are effected, how and why. From this letter you ought to be able to extract what it is you do in fact need. Most of this missive’s contents have been cut & pasted from other correspondence or documents. Even so, it has taken a lot of time & effort to bring this all together.

I consider that this has been worth the effort, as this letter will no doubt prove useful in the future, whether to yet another social- or care-worker, to help complete the next DWP claim-booklet or were I to need hospitalisation.

I should add that if you require any elucidations, let me know; but it is unlikely you would receive a timely response regrettably. I also am aware I need to provide more information on my skin-related health-issues, which I shall endeavour to work upon. Thankfully, it will be a much shorter document.




Once again, my apologies for the appearance of a section of this blog-post. This is due to Blogger. I cannot circumvent how it shows my typing.


  1. Thank you for sharing. This is sobering and informative writing, all I can offer in return is the greatest respect.