Posts Tagged ‘CFS’

I am coming at this topic from twenty plus years’ of Chronic Fatigue Syndrome (CFS, but also see M.E.).
CFS is an extremely frustrating illness – for others. 
That sounds like a joke.

Those who have it just do not have the energy to feel frustrated. 

There are so many aspects to it, and it changes form continually. You’d just be accommodating one state, and it’d all change. Frustrating`?


I was reading a Long Covid site recently, because it is supposed to be very similar to CFS.
There were complaints of feeling like you’ve got rocks in your stomach all the time.
A bit extreme, but the continual gut-discomfort does take its toll. 
It also manifests in a burgeoning growth of eating intolerances. 
It’s mostly cereal – and, yep, that’s bread and cakes, pizza. But also citrus fruits, and… well, it’d be a pain to go on

It’s not just gluten, but all kinds of additives, seeds. 
The continual search for bread alternatives is time-consuming, and it is expensive to buy, and of short-term relief. 
Intolerances build up with those, too, over time.

Brain fog.  
Another site I was reading, and people talked of missing appointments, or forgetting where meet-ups where. 
Easy stuff.

One student… and this is my experience… just couldn’t read anymore.
Imagine getting to the end of a sentence and not remembering the first part. Or moving from a room and suddenly not remembering where you are, or recognising the place you’ve known for years.

It’s the sheer physical operation of, say, reading, but mostly it’s the required high levels of concentration and retention, remembering, cognition. 
You soon learn that these are hugely energy-demanding activities.

And sense of distance, size, proportion – all completely skewed. 
I’m glad I don’t drive, I’d not be able judge distances between or from other vehicles or objects, or the size of things, or speed I was going. 

What’s to be done?

I’ve come across so many people saying This works! Try that! And it ranges from cognitive behaviour work, to self-massage.
But non have worked for me.

So, now, here’s my suggestion. 
It’s not a cure, but it has alleviated conditions. 
So far.

In combination with YourGut+

All advice says to build up to the required dose of on of each, twice a day. Don’t launch straight in. 

The first few times I took a single capsule of YourGut+ the gut discomfort eased. 
That’s no small thing, that gnawing was always at the back of everything, and at the end of the day when what energy there was was lowest… well, you are not the best of company.

YourGut+is basically a probiotic. If you can why not try Probiotic yogurt? It may have a similar effect. And be a lot cheaper.

But to get your appetite back; to know what hunger is like again, after twenty years!

Its’ ingredients don’t seem to promise much: powdered extract of sweet oranges, chamomile, pomegranate, turmeric, resveratrol.
It’s in the combinations. 
Or is it a placebo effect?
Something made a difference: it began with a mild head-swim, but when that cleared, so did my head. 
Well, the awareness of clarity was there. 
I have yet to try-out concentration levels. Remember, mental concentration is hugely energy-debilitating.

The main problem with Photo-V is supply. It sells out quickly, and takes ages for a new batch to be ready.
The site offers an alternative, Pomi-T, but I do not find it as effective: what the body gets used to and accepts is more important.

It has been noticed that I have more energy, am brighter in mood.

The energy doesn’t last, of course – evenings are still out, a long drag to bed, but smoother. What you gain in some quarters, to be more alert, a clearer head, has to be paid for elsewhere. Tiredness hits more and earlier in the day.
It’s worth it, though.

That’s too active a description. No, with CFS it’s a general level of low. No ups or downs.

That’s another thing I noticed with Long Covid sites, commentators constantly say how angry they are.

They are excitable. 
I never had the energy for that. No relish of life, but no depths, just a general low. No spark, no hope, no aspirations. But too fuzzy to realise what was missing.

But then there’s other little gem, P G Tips tea makers now produce tea bags with added Vitamin B12. It’s not my best tea, but….
I couldn’t take B12 in oral form, like so many others – Flax did horrible things to my gut – but in this form Yes!

And the energy it gives!

After twenty years of nothing helping, I have found something that eases things.
It may not work for others. 
But do keep looking.

The food intolerances are classified in CFS literature as Sensitivity.
Sensitivity affects not just eating, but hearing, and sight as well. And probably other areas we don’t normally recognise or know are in use.
And it fluctuates. It is not a static condition.

Full-on sensitivity to light makes sunlight very uncomfortable. It gives twilight blindness. Other times twilight is ok, sunlight appreciated.

Hearing: I tried hearing aids, but still miss so much said.

The point is it is not the eyes or ears, but cognition, that is affected.
Sensitivity hits you where you process the input, not where you receive.

It’s ok when you’re in it, not knowing what you’re like.
But when it eases off for a while, it’s, like,

Syndrome de Fatigue Chronique et Long Covid

Le syndrome de fatigue chronique (SFC, mais aussi M.E.) est une maladie extrêmement frustrante – pour les autres.

Cela ressemble à une blague.

Ceux qui en souffrent n’ont tout simplement pas l’énergie de se sentir frustrés.

Il y a tellement d’aspects à cela, et il change continuellement de forme. Vous ne feriez qu’accommoder un état, et tout changerait.


Je lisais un site Long Covid, car il est censé être très similaire à CFS. Il y avait des plaintes de se sentir comme si vous aviez tout le temps des pierres dans l’estomac.

Un peu extrême, mais l’inconfort intestinal continu fait des ravages.

Il se manifeste également par une croissance florissante des intolérances alimentaires.

C’est surtout des céréales – et, oui, c’est du pain et des gâteaux, de la pizza, des agrumes.

Il ne s’agit pas seulement de gluten, mais de toutes sortes d’additifs, de graines.

La recherche continue d’alternatives au pain prend du temps, coûte cher à l’achat et soulage à court terme.

Les intolérances s’accumulent avec ceux-là aussi, au fil du temps.

Brouillard cérébral.

Un autre site que je lisais, et les gens parlaient de rendez-vous manqués, ou oubliaient où se rencontraient.

Des trucs faciles.

Un étudiant… et c’est mon expérience… ne savait tout simplement plus lire.

Imaginez arriver à la fin d’une phrase et ne pas vous souvenir de la première partie.

C’est l’opération physique pure de la lecture, mais c’est surtout les niveaux élevés requis de concentration et de rétention, de mémorisation, de cognition.

Vous apprenez vite que ce sont des activités extrêmement énergivores.

Et le sens de la distance, de la taille, de la proportion, le tout complètement faussé.

Je suis content de ne pas conduire, je ne serais pas en mesure de juger des distances entre ou d’autres véhicules ou objets, ou de la taille des choses, ou de la vitesse à laquelle j’allais.

La dépression?

C’est une description trop active. Non, avec CFS, c’est un niveau général de faible. Pas de hauts ni de bas.

C’est une autre chose que j’ai remarquée avec les sites Long Covid, les commentateurs disent constamment à quel point ils sont en colère.

Ils sont excitables.

Je n’ai jamais eu l’énergie pour ça. Pas de goût de la vie, mais pas de profondeurs, juste une dépression générale. Aucune étincelle, aucun espoir, aucune aspiration. Mais trop flou pour s’en rendre compte.

Que faire ?

J’ai rencontré beaucoup de gens qui disaient que ça marche ! Cela va du travail cognitif comportemental à l’auto-massage.

Rien de tout cela n’a fonctionné pour moi.

Alors, maintenant, voici ma suggestion.

Ce n’est pas un remède, mais il a atténué les conditions.

Jusqu’à présent.


En combinaison avec YourGut+

Tous les conseils disent d’augmenter jusqu’à la dose requise, ne vous lancez pas directement.

Les premières fois où j’ai pris une seule capsule de YourGut+, l’inconfort intestinal s’est atténué.

Ce n’est pas une mince affaire, que le rongement était toujours à l’arrière de tout, et à la fin de la journée, quand l’énergie était au plus bas… eh bien, vous n’êtes pas la meilleure compagnie.

YourGut+ est essentiellement un probiotique. Si vous le pouvez, pourquoi ne pas essayer le yogourt probiotique ? Cela peut avoir un effet similaire. Et être beaucoup moins cher.

Mais pour retrouver votre appétit; savoir à nouveau ce qu’est la faim, après vingt ans !


Ses ingrédients ne semblent pas promettre grand-chose : extrait en poudre d’oranges douces, camomille, grenade, curcuma, resvératrol.

C’est dans les combinaisons.

Ou est-ce un effet placebo ?

Quelque chose a fait une différence : ça a commencé par un léger bain de tête, mais quand ça s’est dissipé, ma tête a fait de même.

Eh bien, la conscience de la clarté était là.

Je n’ai pas encore testé les niveaux de concentration. N’oubliez pas que la concentration mentale est extrêmement énergivore.

Il a été remarqué que j’ai plus d’énergie, je suis d’humeur plus vive.

L’énergie ne dure pas, bien sûr – les soirées sont toujours dehors, une longue traînée au lit, mais plus douce.

Mais il y a un autre petit bijou, les fabricants de thé P G Tips produisent maintenant des sachets de thé avec de la vitamine B12 ajoutée. Ce n’est pas mon meilleur thé, mais…

Je ne pouvais pas prendre de B12 sous forme orale, comme tant d’autres – le lin a fait des choses horribles à mon intestin – mais sous cette forme oui.

Et l’énergie que ça donne !

Après vingt ans à ne rien faire, j’ai trouvé quelque chose qui facilite les choses.

Cela peut ne pas fonctionner pour les autres.

Mais continuez à chercher.

Sindrome da stanchezza cronica e lungo Covid

La sindrome da stanchezza cronica (CFS, ma vedi anche ME) è una malattia estremamente frustrante – per gli altri.

Sembra uno scherzo.

Coloro che ce l’hanno semplicemente non hanno l’energia per sentirsi frustrati.

Ci sono così tanti aspetti in esso e cambia continuamente forma. Saresti solo accomodante in uno stato e tutto cambierebbe.


Stavo leggendo un sito di Long Covid, perché dovrebbe essere molto simile a CFS. Ci sono state lamentele di sentirti come se avessi sempre delle rocce nello stomaco.

Un po’ estremo, ma il continuo disagio intestinale ha il suo pedaggio.

Si manifesta anche in una fiorente crescita di intolleranze alimentari.

Sono principalmente cereali e, sì, sono pane e dolci, pizza, agrumi.

Non è solo glutine, ma tutti i tipi di additivi, semi.

La continua ricerca di alternative al pane richiede tempo, è costoso da acquistare e offre sollievo a breve termine.

Le intolleranze si accumulano anche con quelle, nel tempo.

Cervello annebbiato.

Un altro sito che stavo leggendo, e la gente parlava di appuntamenti mancanti, o dimenticando dove dove incontrarsi.

Roba facile.

Uno studente… e questa è la mia esperienza… non potevo più leggere.

Immagina di arrivare alla fine di una frase e di non ricordare la prima parte.

È la pura operazione fisica della lettura, ma soprattutto sono gli alti livelli richiesti di concentrazione e ritenzione, ricordo, cognizione.

Imparerai presto che queste sono attività che richiedono molto energia.

E senso di distanza, dimensione, proporzione, tutto completamente distorto.

Sono contento di non guidare, non sarei in grado di giudicare le distanze tra o da altri veicoli o oggetti, o le dimensioni delle cose, o la velocità con cui stavo andando.


È una descrizione troppo attiva. No, con CFS è un livello generale basso. Nessun alto o basso.

Questa è un’altra cosa che ho notato con i siti di Long Covid, i commentatori dicono costantemente quanto siano arrabbiati.

Sono eccitabili.

Non ho mai avuto l’energia per quello. Nessun gusto per la vita, ma nessuna profondità, solo un minimo generale. Nessuna scintilla, nessuna speranza, nessuna aspirazione. Ma troppo confuso per rendersene conto.

Cosa c’è da fare?

Mi sono imbattuto in molte persone che dicono che funziona! Si va dal lavoro sul comportamento cognitivo all’automassaggio.

Niente di tutto questo ha funzionato per me.

Quindi, ora, ecco il mio suggerimento.

Non è una cura, ma ha alleviato le condizioni.



In combinazione con YourGut+

Tutti i consigli dicono di accumulare la dose richiesta, non lanciarti direttamente.

Le prime volte che ho preso una singola capsula di YourGut+ il disagio intestinale si è attenuato.

Non è una cosa da poco, quel rosicchiare era sempre alla base di tutto, e alla fine della giornata quando l’energia che c’era era più bassa… beh, non sei la migliore compagnia.

YourGut+ è fondamentalmente un probiotico. Se puoi perché non provare lo yogurt probiotico? Potrebbe avere un effetto simile. Ed essere molto più economico.

Ma per riprendere l’appetito; per sapere di nuovo com’è la fame, dopo vent’anni!


I suoi ingredienti non sembrano promettere molto: estratto in polvere di arance dolci, camomilla, melograno, curcuma, resveratrolo.

È nelle combinazioni.

O è un effetto placebo?

Qualcosa ha fatto la differenza: è iniziato con una lieve nuotata della testa, ma quando si è schiarito, anche la mia testa si è schiarita.

Ebbene, la consapevolezza della chiarezza c’era.

Devo ancora provare i livelli di concentrazione. Ricorda, la concentrazione mentale è estremamente debilitante dal punto di vista energetico.

È stato notato che ho più energia, sono più luminoso nell’umore.

L’energia non dura, ovviamente: le serate sono ancora fuori, una lunga trascorsa a letto, ma più tranquilla.

Ma poi c’è un altro piccolo gioiello, i produttori di tè P G Tips ora producono bustine di tè con aggiunta di vitamina B12. Non è il mio miglior tè, ma…

Non potevo assumere B12 in forma orale, come tanti altri – il lino ha fatto cose orribili al mio intestino – ma in questa forma sì.

E l’energia che dà!

Dopo vent’anni senza alcun aiuto, ho trovato qualcosa che facilita le cose.

Potrebbe non funzionare per gli altri.

Ma continua a cercare.

Síndrome de Fatiga Crónica y Larga Covid

El Síndrome de Fatiga Crónica (CFS, pero también vea M.E.) es una enfermedad extremadamente frustrante, para otros.

Eso suena como una broma.

Aquellos que lo tienen simplemente no tienen la energía para sentirse frustrados.

Tiene tantos aspectos y cambia de forma continuamente. Solo estaría acomodando un estado, y todo cambiaría.


Estaba leyendo un sitio de Long Covid, porque se supone que es muy similar a CFS. Hubo quejas de sentir que tenías piedras en el estómago todo el tiempo.

Un poco extremo, pero el continuo malestar estomacal pasa factura.

También se manifiesta en un crecimiento floreciente de intolerancias alimentarias.

Es principalmente cereal, y sí, eso es pan y pasteles, pizza, frutas cítricas.

No es solo gluten, sino todo tipo de aditivos, semillas.

La búsqueda continua de alternativas de pan requiere mucho tiempo, es cara de comprar y de alivio a corto plazo.

Las intolerancias también se acumulan con ellos, con el tiempo.

Niebla del cerebro.

Otro sitio que estaba leyendo, y la gente hablaba de faltar a citas u olvidar dónde se encontraban las reuniones.

Cosas fáciles.

Un estudiante… y esta es mi experiencia… simplemente no podía leer más.

Imagina llegar al final de una oración y no recordar la primera parte.

Es la pura operación física de la lectura, pero sobre todo son los altos niveles requeridos de concentración y retención, recuerdo, cognición.

Pronto aprenderá que estas son actividades que demandan mucha energía.

Y sentido de distancia, tamaño, proporción, todo completamente sesgado.

Me alegro de no conducir, no sería capaz de juzgar las distancias entre o desde otros vehículos u objetos, o el tamaño de las cosas, o la velocidad a la que iba.


Esa es una descripción demasiado activa. No, con CFS es un nivel general bajo. Sin altibajos.

Esa es otra cosa que noté con los sitios de Long Covid, los comentaristas constantemente dicen lo enojados que están.

Son excitables.

Nunca tuve la energía para eso. Sin gusto por la vida, pero sin profundidades, solo una depresión general. Sin chispa, sin esperanza, sin aspiraciones. Pero demasiado borroso para darse cuenta de nada de eso.

¿Qué hay que hacer?

Me he encontrado con muchas personas que dicen ¡Esto funciona! Abarca desde el trabajo cognitivo conductual, hasta el automasaje.

Nada de eso me ha funcionado.

Entonces, ahora, aquí está mi sugerencia.

No es una cura, pero ha aliviado las condiciones.

Hasta aquí.


En combinación con YourGut+

Todos los consejos dicen que para acumular la dosis requerida, no se lance directamente.

Las primeras veces que tomé una sola cápsula de YourGut+, el malestar intestinal disminuyó.

Eso no es poca cosa, ese roer siempre estuvo detrás de todo, y al final del día cuando la energía que había era la más baja… bueno, no eres la mejor de las compañías.

YourGut+ es básicamente un probiótico. Si puedes, ¿por qué no probar el yogur probiótico? Puede tener un efecto similar. Y ser mucho más barato.

Pero para recuperar el apetito; saber cómo es el hambre otra vez, ¡después de veinte años!


Sus ingredientes no parecen prometer mucho: extracto en polvo de naranjas dulces, manzanilla, granada, cúrcuma, resveratrol.

Está en las combinaciones.

¿O es un efecto placebo?

Algo marcó la diferencia: comenzó con un leve nado en la cabeza, pero cuando se aclaró, también lo hizo mi cabeza.

Bueno, la conciencia de la claridad estaba allí.

Todavía tengo que probar los niveles de concentración. Recuerde, la concentración mental debilita enormemente la energía.

Se ha notado que tengo más energía, tengo un estado de ánimo más brillante.

La energía no dura, por supuesto: las noches todavía están fuera, una larga caminata hasta la cama, pero más suave.

Pero luego hay otra pequeña joya, las teteras P G Tips ahora producen bolsitas de té con vitamina B12 añadida. No es mi mejor té, pero…

No podía tomar B12 en forma oral, como tantos otros, Flax me hizo cosas horribles en el intestino, pero de esta forma sí.

¡Y la energía que da!

Después de veinte años sin que nada me ayudara, he encontrado algo que facilita las cosas.

Puede que no funcione para otros.

Pero sigue buscando.


Posted: August 14, 2015 in Chat
Tags: , , , ,

What follows is part of a personal testimony. The original was accepted and used as resource material on the region’s Work Psychology database.

Why, people might ask, is there all this fuss about it?
There is all this fuss because it is
a) unrecognised by medical authorities
b) devastating to live with
c) has no apparent cure. And we are so keyed-into our cures for nearly everything.

I would climb out of bed, wash, dress… and by the time got down stairs was so exhausted all I could so was sleep in a chair for about an hour. Then drink, eat, and again too exhausted for anything else. Days, weeks, months went by like this. Eighteen months, before this pattern eased off.

It was just post-operative trauma, I thought, it would pass off if left alone. Things do. It didn’t exhibit itself as an emotional or mental disturbance. It was purely physical.
I’d had a routine operation – only I found my body rejected the stitiches, and the wound became infected. On check-up several months later I was really unwell. The infection was successfully treated (will not go into that, it was not pleasant).
But I just did not seem to be picking up again. We are used to the quick re-establishment of normal health after a successful treatment.

I could not get my energy back. In fact I was losing more and more; a slippy slide to nowhere.
To read a newspaper was exhausting; the degrees of concentration needed just to sit upright, holding the paper, manipulating fingers to turn pages, of holding the arms out; the mental concentration of scanning pages, trying to make sense of articles, of following-through a story-line, and then to remember the background to the story.
All this used up tremendous amounts of energy.

After a while it became impossible to get much from a newspaper, nothing connected or made much sense, paragraphs wouldn’t hold together. Even getting through a sentence of anything other than simple syntax became a struggle.
All these were actions demanding energy. And there didn’t seem to be much of it about.

It was impossible to get an overview of one’s condition.

To walk two hundred yards to the local v

Vets to pick up pet medicine I would arrive panting for breath, utterly drained, covered in cold sweat; and then to sit for a good ten minutes or more before feeling capable of even attempting to tackle the simple interaction of a discussion with the assistant.
Every day was like that – apart from the Vet visit, I hasten to add. There is little to remember of that period, that lasted roughly two years. To vacuum just one room was a major feat; totally exhausting.

Sleeping was difficult: I’d collapse into bed, then wake every hour or so throughout the night; restless when I did sleep. My temperature was all over the place.
To go to the bathroom in the night was to continually walk into things; the furniture, the wall, the door; was to lose one’s way, to literally walk around in circles.

It was like living in a half-world, a half life. The days were blurry, groggy; they consisted of dragging oneself around the house; pottering; doing what one could manage; keeping oneself going; doing things.
I’d go into another room only to stand there, stumped: why did I come in here? Only once or twice I experienced this, I’d go into another room, to turn around, and not even recognise it: where am I? To go into the hall, say, was to forget how to get out again.

I continually stumbled into furniture as my sense of balance teetered; there were, and still are, frequent dizzy spells; nausea, then gluten, and a yeast intolerance. There is also an enhanced sensitivity to noise, light, temperature, sudden movement.

I have an utter loss of sense of direction; and widely varying temperature fluctuations both day and night. Not all the time, but spells of it, and recurring at intervals. And then the pattern would change, different aspects would be affected, and the previous ones less so.

And to ache in every part one’s body, places one did not know could ache. Continual. A general bodily restlessness; to be unable to sit for long; unable to lie for long; to drag oneself around because one could not do anything else.

And to completely lose one’s sense of time, distance, quantity. Even now I quickly lose sense of distance, size, speed; when I remember something seen its size seems all over the place: was it big, that big, or small? How far away was it? When was this?
And the answers are always: I don’t know.

To not be able to articulate a simple thought, to put a sentence together; the words simply disappeared from one’s mind in the process.

To speak to more than one person in a day, was to exhaust oneself for days afterwards.

To be capable of little emotional response to a celebration, an upset, a meeting of friends. The sheer exhaustion of energy-reserves produced by daily life left nothing for a sudden or unexpected demand, or drama.

Indifference to most of the niggles and gnawings of our everyday life comes as a bit of a relief, but leaves the weight of concerns on one’s partner.
– I have been extremely lucky, my wife has been very understanding and supportive. She has also the skills and expertise to earn us both a living as I am going through all this. Her patience and stamina leave me awed.

Over time you become quite an expert economist, in terms of energy-use. The most demanding user of scant energy resources is the brain. And so, to cover vital functions adequately, the thinking and mental functions take the hit, they are the most expendable to the organism. That says a lot.

Some credited person commented recently, that ME scrambles one’s metabolism. Yes, it feels like that, everything feels scrambled, no pattern, no rhythm.

After about six years I was able to come up with this image (I was able to expand on the basic idea over about twelve months: levels of concentration and general energy fluctuate so enormously):
on a computer the Windows program is the effect produced by many other programs working concurrently.
On a low-memory system a message would flash up sometimes: You have not sufficient memory to run this, or some such. Shut down other programs… or whatever.

Take Windows for our normal, everyday awareness, I said, and change ‘sufficient memory’ for ‘sufficient energy’ – and you get an idea of the ME effect.
Not that it’s a case of continually running on half power, or a compromised main program where only a few base programs run, but more a case of all the base programs running low at different rates. And those rates continually fluctuating, so there is little or no follow through of information.
And what are those base programs?

They are body-map ones; the body awareness ones: limb position, limb position in relation to the body and at any given time or point or posture; limb position in relation to the environment etc. There is the control of digestion, transit and excretory functions.
The body-conscious programs: the regulation of organs, glands etc. How’s the liver
doing? How are the kidneys?
There is the body clock and its tick through every organ and gland and muscle of the body.

I mentioned the everyday, normal muscle control, needed in such a simple task as reading a newspaper. Compare that with the far more complex operations we continually put ourselves through.
Why is travelling so exhausting? It is because of the millions of little but continual, and compound, muscular and balance adjustments that are required when riding over surfaces.
All these are regulated by the cerebellum and brain-stem sites.
There are also the specialist processors: the hippocampus, hypothalamus, pineal, thyroidal etc.

And then there are the also the mental programmes. Awareness, it seems in the current thinking, is a complex web of interacting mental processes: the Windows analogy, earlier.
There is thinking, and thought-awareness; the abstract thought, and the basic thought processes.
Memory, in some form or other, comes into virtually every one of these processes, both bodily and mental.
And so does the power source: energy.

When the power source is compromised, so is everything else, from probably, basic cell  functions, to the ability to dream.

But let us not get too tied down with the computer analogy.
Like all analogies, lexical and philosophical, they are leaky, and only of varying, approximate, and limited use.

Our normal, everyday also consists of numerous other thought processes that are more or less constantly running; what are termed the ‘higher functions’ of the brain. Those little things we are keeping in mind: to phone home, check on the kids, parents etc. There are also the deeper things we are slowly working our way through: working out the tax return, or some unusually intractable problem at work. There are also the constant attention-grabbers, whether at work, on the street, or some family negotiating etc.

With ME in its earlier stages it appears almost impossible to run even one of these: one exists in a constant fog of semi-awareness; decisions, even simple problem-solving is impossible; nothing makes sense, the thread of memory that ties all the thought-process together cannot be sustained. Luckily, one is not aware of one’s state at the time.

Six years on, and I had managed to get a part time job. The duties were to be there early, and on hand throughout the day, just in case.
I was very, very lucky getting this job. There are not many openings for people whose concentration is fitful, limited, and who tire at the least physical activity.
I had come to some degree of understanding of the state I was in. I had the usual medical tests: 5 vials of blood taken. But it all depends on what it is tested for: the ‘usual’ tests came back with nothing, of course.
At last I felt capable of undertaking the task of applying for a Disability Allowance.

I worked two and half days per week. At a push I could do three. Any more sent me rocketing back to square one, or two.

But I was not eligible for Disability Allowance: I worked over the statutory six hours maximum required.
When I would have been eligible, was when I was least capable of applying for it.

It has been postulated that ME has been known over time under many different names, whether as ‘the soldier’s disease’ of the American Civil War; or as ‘atypical poliomyelitis’; as a muscular rheumatism….

In 1681 Thomas Sydenham described an illness with a pattern very similar to our modern illness. It is suspected that Florence Nightingale was a sufferer on her return from the Crimea: all those years housebound, unable to receive visitors….

Various books suggest ME may be – a form of polio, without the muscle wastage
– the after-effects of viral infections: glandular fever etc
– the effects of an, as yet unidentified, stomach virus
– the build up of toxicity in the brain and spine etc
All these are highly plausible, all have many merits, and all are based on sound clinical thinking.

The theories I do have trouble with are the psychological-cause ones.
In the case I have described above in this article I can detect no psychological causes whatsoever. There are plenty of underlying psychological factors which maybe add to the already established energy drain, but the effects of the condition have exhibited themselves in an entirely physical way.

Ok, there are depressions, swinging moods, feelings of hopelessness…. There have been times on the street when I have felt so desperate that ‘not being’, to flick an off-switch for a period, would have been very tempting.
I cannot help but think it would be terribly strange if there were not psychological aspects to this, after all it is such a fundamentally frustrating illness, and the time periods involved in its exhibiting its many and varied effects is more prolonged than some illnesses.

One cannot but wonder whether the prolonged disruption of normal behavioural functioning, of habits, patterns of thought etc, that ME effects, can have prolonged lasting effect on the personality. We know that prolonged hospitalisation, (ruling out MRSA etc) does take a psychological toll on the patient. Whether we will see equivalent behavioural change among the more severely affected ME people still remains to be seen.

Factors in this include the home-background of acceptance, understanding, and the overall attitudinal experience, as well as support care, early recognition and appropriate rest treatment.

There are energy supplements out there, and ones that attempt to target one’s mitochondrial ‘power plants’. I tried those: the first week was great, it felt like normality. Then the second week dropped me two floors down, and I could  not tolerate them. The same old pattern.

What has become apparent through this, and over time, is that there does not seem to be any part of the awareness or one’s faculties unaffected by ME.
I can only conclude from this that we are, alas, only physical beings. That we have no metaphysical element, no ‘spirit’ above these things.
But maybe, just maybe, it is my means of investigation that is at fault; my assessment is probably based on incomplete or corrupted data.
Maybe I cannot yet summon the degree energy for abstract thought, or range of awareness, to allow a proper overall assessment.

What is also apparent is that if we can grasp, visualise, understand, the workings of the physical body, and of the brain, then we are missing most of it. We are mostly self-regulating organic systems that have developed and refined their processes over millennia.

I am tempted to venture that we have hardly begun to understand the complexity of the human body.

I have lost sixteen years to this – that’s what it feels like: lost, irretrievable. It is still going on.
So now I do what I can to rescue what I can of those years, and of the years to come.