Severe M.E. Day 2024: FUNCAP55

 

Today, 8th August, is Severe M.E. Day. I have previously blogged on this date.

In 2022 about my social-care needs. Link.

In 2021 about my poëm “Missing” having been published. Link.

In 2018 I could not write much due to my condition, so posted a relaxing tune and accompanying video. Link.

In 2016 about Severe M.E. Day. Link.

In 2015 about why I could not post on actual date, but rather late. Link.

When I have not blogged it is due to being too ill to do so.

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In January this year I took the FUNCAP55 functionality-test. As I understand it is a project instigated by the Norwegian M.E. Association & Prof. K. Sommerfelt in 2022. He presented the details at the 15th Invest in M.E. Research [IIMER] International M.E. Conference 2023. This link takes one to YouTube to a twenty-two minute video.

A pre-print paper was published in September 2023. This link takes one to preprints.org.

In late 2023 or very early 2024, Raff Benato turned the questionnaire into an easy-to-use mobile app. This is the link for the app.

In June 2024 the paper was published in “Journal of Clinical Medicine”. This link takes one to the US National Library of Medicine, where one may read the full paper.

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The results of my first attempt can be seen in the image above. Over all, I came out as mostly “severe” with some “very severe” areas.

A few days ago I took the test a second time (image above), that is approximately six months after the first. I was not anticipating much change - how wrong could I have been! Remember, this is based on typical not best/worst days. I had not reälised I had deteriorated so much. The vast majority of my results now place me in the “very severe” category on the majority of my days. Heigh-ho! I suppose I ought to have expected same, as the past three months I have been almost totally bedridden and unable to do much more than eat, drink and use the w.c. Whilst most days I can spend some time on-line, I have to limit what I do to prevent migraines. Much of the time I lie abed, blind-folded (to avoid photophobia) and with noise-reducing headphones (to avoid hyperacusis). It is not much of a life, but there are people with M.E. (PwME) who are fed & watered intravenously, who cannot even use a urine-bottle without assistance.

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Severe M.E. is a hellish life……

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Social-Care Crisis: Malnutrition, Dehydration, No Medications, No Hygiene-Support…

[Image description: the writer lying abed, unkempt.]

Since the withdrawal of all my medications three months ago I have become even more anxious, depressed, emotional, edgy, hyper, exhausted - a constant stressful and distressing mælstrom, never knowing what is next. I have no idea any more how I will reäct to anything.

These past few days I have been really weepy. I suspect acknowledging that yet another part of my life is most likely over for ever is hitting me hard: I have been deleting my dating-apps as I am not, and have not been for some time, able to date. Of course, there is always Hope: a cure or at least a remedy might be found (there are promising noises by researchers - but people with Myalgic Encephalomyelitis (pwME) have heard them previously but alas in vain); or perhaps - I am not willing to discount the possibility - even a miracle might occur… But, currently, the likelihood is that I am now on the ineluctable path from severe M.E. to very severe M.E. As far as I know, no-one has ever fully recovered from this worst category.

Who would have thought that ensuring a person was adequately fed and hydrated, might have prevented a deterioration in their state of health, let alone their wellbeing? Probably most folk with any iota of common-sense. Alas, bureaucracy (in my case Trafford Council), despite plenty of written communications apprising them of the issues chose to ignore my pleas. In August 2021 they reduced my daily visits (11.00, 16.00 & 20.00) to two in a four-hour window, leaving me some twenty hours without food and hydration. I need to be prompted and overseen to eat and drink. Even when a charity stepped in with a hydration-system after weeks of being given far less than NHS guidelines, the authority was not shamed into altering course.

The NICE guideline for Myalgic Encephalomyelitis, NG206, is quite explicit:

“Dietary management and strategies

Also see the section on care for people with severe or very severe ME/CFS.

1.12.19

Emphasise to people with ME/CFS the importance of adequate fluid intake and a well-balanced diet according to the NHS eat well guide.

1.12.20

Work with the person and their family or carers (as appropriate) to find ways of minimising complications caused by gastrointestinal symptoms (such as nausea), changes to appetite, swallowing difficulties, sore throat or difficulties with buying, preparing and eating food.

1.12.21

Encourage people with ME/CFS who have nausea to keep up adequate fluid intake and advise them to try to eat regularly, taking small amounts often. Explain that not eating or drinking may increase their nausea.

1.12.22

Refer people with ME/CFS for a dietetic assessment by a dietitian with a special interest in ME/CFS if they are:

losing weight and at risk of malnutrition

…”

Well, three months ago, allegedly I swore at a carer, and that was sufficient for them to withdraw carers. This is a catch-22: failure to regularly feed & hydrate throughout the day results in lowered blood-sugars. In the short-term this affects mood. How much more so after two years of failings in care? I can hardly be held responsible for my mood-swings, when the failure to properly care caused those very mood-swings in the first instance. This is gaslighting. Why did the carers not refer the matter to their manager for referral to my G.P. if they perceived a deterioration in my behaviours?

Surely the greater abuse between an isolated incident of swearing at a carer and complete withdrawal of care is the latter? Apparently not so.

It seems carers can mistreat carees with impunity. Mistreatment includes failing to act to ensure a client’s welfare. One example, some of the carers noted I was not drinking sufficient. They could have taken steps to encourage me to drink. They could have reported to their managers. They could have reported their managers for failing to act. They could have whistleblown. Almost all the carers could not understand why I did not have a morning call - removed in August 2021. But they did nothing for some 20-21 months.

I kept the Care Quality Commission (CQC) apprised of the ongoing failings. They also did nothing. They simply let matters drag on.

In the meantime I lost most of my ability to go downstairs to help prepare the evening-meal: from several times per week to no more than once every ten to fourteen days.

I do not know whether restoring and increasing food & drink intake would help me regain abilities or whether they are lost for ever now. I can hope for the better option.

I contacted my local M.P., Graham Brady, in mid-December. Other than acknowledgments to my emails, I have heard nothing.

I contacted the local police, Greater Manchester Police (GMP), at about the same time in respect to safeguarding and breeches by various agencies involved in my care. I have not even had acknowledgments from the service.

I have no idea what to do next, as I am too ill to contact a solicitor. The person who was giving me advice is no longer available and at this juncture I just cannot cope with strangers and more stress.

Those who ought to act, have thus far failed to do so.

What ought I to do?

What can I do?

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“Missing” Published!

ME Action requested submissions from creatives with Severe ME or Very Severe ME to recognise, remember and support said folk on Severe ME Awareness Day (8th August each year).

I am thrilled that they accepted and published one of my poëms under my nom de plume, Criquaer! Follow this link.

To read the text of the poëm in full, please refer to my blog-post from January this year.

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So chuffed!

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