Tuesday, 25 December 2018

Seasons Greetings 2018

A Very Happy Christmas to readers of my blog, your families and friends.

From the Bible –

Luke ch 2 v 1 – 19 –

1 And it came to pass in those days, that there went out a decree from Caesar Augustus that all the world should be taxed.

2 (And this taxing was first made when Cyrenius was governor of Syria.)

3 And all went to be taxed, every one into his own city.

4 And Joseph also went up from Galilee, out of the city of Nazareth, into Judaea, unto the city of David, which is called Bethlehem; (because he was of the house and lineage of David:)

5 To be taxed with Mary his espoused wife, being great with child.

6 And so it was, that, while they were there, the days were accomplished that she should be delivered.

7 And she brought forth her firstborn Son, and wrapped Him in swaddling clothes, and laid Him in a manger; because there was no room for them in the inn.

8 And there were in the same country shepherds abiding in the field, keeping watch over their flock by night.

9 And, lo, the angel of the Lord came upon them, and the glory of the Lord shone round about them: and they were sore afraid.

10 And the angel said unto them, Fear not: for, behold, I bring you good tidings of great joy, which shall be to all people.

11 For unto you is born this day in the city of David a Saviour, which is Christ the Lord.

12 And this shall be a sign unto you; Ye shall find the Babe wrapped in swaddling clothes, lying in a manger.

13 And suddenly there was with the angel a multitude of the heavenly host praising God, and saying,

14 Glory to God in the highest, and on earth peace, good will toward men.

15 And it came to pass, as the angels were gone away from them into heaven, the shepherds said one to another, Let us now go even unto Bethlehem, and see this thing which is come to pass, which the Lord hath made known unto us.

16 And they came with haste, and found Mary, and Joseph, and the Babe lying in a manger.

17 And when they had seen it, they made known abroad the saying which was told them concerning this Child.

18 And all they that heard it wondered at those things which were told them by the shepherds.

19 But Mary kept all these things, and pondered them in her heart.


A well known Carol –

While shepherds watched their flocks by night,
All seated on the ground,
The angel of the Lord came down,
And glory shone around.

‘Fear not,’ said he, for mighty dread
Had seized their troubled mind;
‘Glad tidings of great joy I bring
To you and all mankind.

‘To you, in David’s town, this day,
Is born, of David’s line,
A Saviour, Who is Christ the Lord;
And this shall be the sign:

‘The heavenly Babe you there shall find
To human view displayed,
All meanly wrapped in swaddling bands,
And in a manger laid.’

Thus spake the seraph; and forthwith
Appeared a shining throng
Of angels, praising God, who thus
Addressed their joyful song:

‘All glory be to God on high,
And on the earth be peace;
Goodwill henceforth from Heaven to men
Begin and never cease.’

Nahum Tate, 1652-1715


C H Spurgeon’s Morning Devotional for 25th December

http://bible.christiansunite.com/Morning_and_Evening/chme1225.shtml

"Behold, a virgin shall conceive, and bear a son, and shall call his name Immanuel."-Isaiah 7:14

Let us to-day go down to Bethlehem, and in company with wondering shepherds and adoring Magi, let us see Him who was born King of the Jews, for we by faith can claim an interest in Him, and can sing, "Unto us a child is born, unto us a son is given." Jesus is Jehovah incarnate, our Lord and our God, and yet our brother and friend; let us adore and admire. Let us notice at the very first glance His miraculous conception. It was a thing unheard of before, and unparalleled since, that a virgin should conceive and bear a Son. The first promise ran thus, "The seed of the woman," not the offspring of the man. Since venturous woman led the way in the sin which brought forth Paradise lost, she, and she alone, ushers in the Regainer of Paradise. Our Saviour, although truly man, was as to His human nature the Holy One of God. Let us reverently bow before the holy Child whose innocence restores to manhood its ancient glory; and let us pray that He may be formed in us, the hope of glory. Fail not to note His humble parentage. His mother has been described simply as "a virgin," not a princess, or prophetess, nor a matron of large estate. True the blood of kings ran in her veins; nor was her mind a weak and untaught one, for she could sing most sweetly a song of praise; but yet how humble her position, how poor the man to whom she stood affianced, and how miserable the accommodation afforded to the new-born King!

Immanuel, God with us in our nature, in our sorrow, in our lifework, in our punishment, in our grave, and now with us, or rather we with Him, in resurrection, ascension, triumph, and Second Advent splendour.


Monday, 17 December 2018

Could Poor Microcirculation Be Causing Chronic Fatigue Syndrome (ME/CFS)?

https://www.prohealth.com/me-cfs/library/poor-microcirculation-causing-chronic-fatigue-syndrome-cfs-88729

The idea that the blood delivery system is causing the problems with energy production is not new

By Cort Johnson • ProHealth.com • December 17, 2018

The Gist

Shungu’s brain findings suggest high levels of oxidative stress and low levels of antioxidants are constricting the blood vessels.

The blood vessel constriction is producing a low oxygen environment which forces the cells in the brain to rely on anaerobic energy production.

High levels of oxidative stress are amongst the most consistent findings in chronic fatigue syndrome (ME/CFS).

Our red blood cells provide the oxygen our cells need to do their work. In order to flow properly through the capillaries to our cells they must be round and elastic.

The SJSU/Stanford study overseeen by Ron Davis suggests that ME/CFS patient’s red blood cells are often no longer round and take longer than usual to enter the capillaries and flow through them. Their membranes are stiffer than usual as well and they contain high levels of free radicals.

The red blood cells still contain normal levels of hemoglobin but their distorted shapes and inelastic and damaged membranes may be keeping them from delivering normal amounts of oxygen to the cells.

The red blood cell issues and Shungu’s findings suggesting that narrowed blood vessels are creating a hypoxic or low oxygen environment in the brain provide another possible way to explain for the low energy problems in ME/CFS.

Three more grants by the Open Medicine Foundation and Ron Davis will attempt to further characterize the red blood issues in ME/CFS with an eye to producing a cost-effective biomarker.

Could the microvascular system – the small capillaries and the red blood cells that run through them – hold the key to energy problems in chronic fatigue syndrome (ME/CFS) and perhaps fibromyalgia? The idea that the blood delivery system – not some metabolic derangement per se – is causing the problems with energy production is not new.

At first Shungu thought ME/CFS was a mitochondrial disorder but his studies convinced him it was probably more a disease in which poor microcirculation impaired the ability of the mitochondria to produce energy.

Over a decade ago, brain scans from Dr. Cheney’s ME/CFS patients caught Dikoma Shungu’s eye.  The only other time he’d seen lactate levels like that before was in people with primary mitochondrial disorders.

Three vital seed grants from the Solve ME/CFS Initiative allowed Shungu’s work to proceed – work that is still going on today and that’s mushroomed into millions of dollars in funding from the NIH. That work has produced one of the most consistent findings in all of ME/CFS research: Shungu’s five studies have all found increased lactate levels in ME/CFS patients’ brains.

Over time Shungu developed a startling hypothesis. While ME/CFS brains may look like they have a mitochondrial disease, they don’t. That doesn’t mean the mitochondria are working well – they’re not – but they’re not underperforming because of a metabolic problem. Instead, Shungu believes they’re getting pummeled by oxidative stress, resulting, at least in part, from a dramatic decline in the antioxidant system that’s designed to keep oxidative stress in check.

Shungu believes that an immunological change or pathogen triggers the production of pro-inflammatory cytokines and the potent free radical peroxynitrite. When the muffled antioxidant system fails to mop up peroxynitrite, the free radical smashes into and rips up the lipid membranes of cells, and in doing so forms a major menace in ME/CFS – isoprostanes.

Potent vasoconstrictors, the isoprostanes then compress the blood vessels, reducing blood flow and producing a hypoxic or low oxygen environment. That low oxygen environment forces the cells to rely on anaerobic energy production.

In Shungu’s view, then, ME/CFS is not a mitochondrial or metabolic disease; its much simpler than that – it’s an oxidative stress induced micro-circulatory disease. The oxygen the muscles and other energy intensive tissues such as the brain need to produce abundant amounts of energy? It’s there, but it’s just not getting through.

To read the rest of the article, go to –

https://www.prohealth.com/me-cfs/library/poor-microcirculation-causing-chronic-fatigue-syndrome-cfs-88729

Thursday, 6 December 2018

From the 25% ME Group: A Patient’s Perspective - Information Leaflet for Professionals Caring for People with Severe M.E. (Myalgic Encephalomyelitis)

https://25megroup.org/download/1796/?v=2299

SOME FACTS ABOUT SEVERE M.E.

It is important for professionals and carers to remember that this illness can be made worse with physical activity, talking, trying to concentrate or indeed any kind of stimulation or exertion.

Unfortunately this is not widely understood and the misconceptions surrounding this illness can cause additional physical and emotional suffering for those with M.E.

Researchers have demonstrated numerous abnormalities of the immune, muscular, cardiovascular, and central nervous systems. The emerging picture is of a multi-system disease with a strong component of immune and neurological dysfunction. The World Health Organisation recognises M.E. as a neurological illness.

Myalgic Encephalomyelitis (M.E.) describes an illness characterised by a combination of muscle pain (myalgia), and neurological and cognitive symptoms such as memory loss and concentration difficulties (hence ‘encephalomyelitis’).

As with any illness, the symptoms and disability which results will be experienced differently by each individual. Symptoms can vary in severity and commonly include chronic pain and lack of stamina / weakness of the muscles and limbs, acute hypersensitivity to stimuli such as light and noise, cognitive and memory problems, vocal/muscular limitations, multi-joint pain, and severe migraine type headaches.

These are real physical symptoms, which also cause severe distress to the person suffering from them.

The vast majority of severely affected sufferers are virtually housebound or bedbound due to the effects of the disease.

This means their physical and mental limitations are very acute. Commonly the person will require to use a wheelchair to get around, help with transferring from seat to seat within and out with the home, and may have problems with sitting up, using their arms and hands for even simple tasks like doing up buttons on clothing, and have difficulties toileting and bathing themselves. Some very severely affected patients are unable to do any of these tasks because of very severe pain and muscle weakness (not due to misuse or under use) and even transient paralysis - normally down left side. This can leave the person unable even to swallow, or to turn themselves in bed.

SO HOW CAN YOU HELP SEVERE M.E. SUFFERERS?

• People with severe M.E. are asking for no more than other ill people. They need professionals to be aware of the devastating disabling effects of the illness, and its varied symptoms.

• Even severe debility may not be instantly apparent – for example a sufferer may be able to walk to the toilet when required, but unable to sit up in bed for more than a few minutes, watch TV or go out even in a wheelchair, and they may find that they expend most of their energy on something as simple as eating.

• M.E sufferers are happy to arrange for information to be given to any health care or social services professional, if this will help alleviate the current trend of being met with scepticism and disbelief.

• Sufferers need people to respect their experience and knowledge of their own illness. They want to get better - to regain what they have lost. Sadly, complete recovery is rare. Meanwhile the patients are the only ones who know where their limitations lie, and how much they can do without exacerbation.

• Conspicuous deterioration of symptoms after exertion or stimulus –often apparently trivial– is a key feature of this illness. In particular there is a body of research demonstrating abnormal response to exercise and many members of the 25% ME Group have only become severely affected after attempting this. It is important to be aware of the danger of steering patients towards an approach that is highly likely to cause more harm than good.

Please be a responsible professional and carer - to do this you need to listen to what is being said to you by the M.E. patient.

A FINAL MESSAGE

Most importantly, please listen to the person with M.E. There can be harmful consequences for M.E. patients when they are encouraged to push on through the symptoms.

Thank you for your time, please feel free to contact us at the 25% M.E. Group for more information or to use our service as a resource.

If you have any questions, opinions or general concerns that you wish to be addressed, we are more than happy to hear from you. Should you wish to make any comments or submit your views please do so using the form below and return to the address provided on the front of this leaflet. Or you can contact us by e-mail at: enquiry@25megroup.org

Saturday, 1 December 2018

The truths of living with severe M.E.

https://www.ucan2magazine.co.uk/blog/jessica/M.E.

Here Jessica Taylor-Bearman, who has M.E. and is the author of A Girl Behind Dark Glasses, describes her time in hospital from the age of 15 – and how she became determined to document her experience, despite being severe bouts of exhaustion…

When one gets admitted into hospital, it is always thought that it will only be for a short time, whilst they fix you and then you’re back into the whirlwind of real life, so when I was first taken in with very severe M.E., I thought that it would be the same. It wasn’t. Days turned into weeks, that soon became months and years. Four to be exact. I never imagined that I would be hospitalised for such a long time from the age of 15 but there really was no other choice. Despite it being detrimental to my health to be in hospital, my needs could not be catered for in the community.

Hospitals are anything but ideal when you are sensitive to noise to such an extent that even a pin drop hurts, and to light so much so that you had to wear dark glasses all the time, they are hell. It was made even more difficult by the fact for over the half of the time I was there, I could not speak, move or eat. Tubes kept me alive, whilst passive movements were keeping my range up. Being voiceless was the most difficult element because people didn’t understand my needs and unfortunately, didn’t want to give me the time of day.

M.E. is like living with a constant broken battery of energy. There are no Duracell batteries for this bunny! Everything you do costs, whether it be just talking to someone or sitting in a chair. It is all about pacing the day, so you can conserve energy at every opportunity. When I wake up, I must wait for my energy supply to see what will be possible with the day.

Sometimes, I will be able to do some of my paintings or go on a short wheelchair trip and other times, I can be in paralysis for over nine hours, unable to speak or move. One room is often my whole world, and I spend 23 hours at least in bed. This is a huge improvement for me and is one of the reasons I have managed to cope. Back in 2006, the very best I could do was five minutes concentrating on something and I spent all day every day in bed.

Coping with severe M.E. is difficult, and it is hard to feel like you are living a life and not just existing. I do this by concentrating on the really small things and finding joy in them. I had always said I was going to write a book, and to have accomplished that is a massive achievement. I paint through laughter, and this also gives me great happiness. It is incredibly frustrating to not be able to do exactly what you want and to never know how you are going to be on a given day. Life has become a case of surviving through the pain and suffering. We are like butterflies, fighting for our day to break through our cocoons and fly again.

Jessica’s book A Girl Behind Dark Glasses is priced £12.99 and published by Hashtag Press. Follow Jessica on Twitter @jayletay or see jaytay.co.uk to follow her M.E. journey.