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.

Monday, 26 November 2018

Invest in ME Research Christmas/New Year Fund Appeal


Help Us Fund the Future for Research into ME

Invest in ME Research Press Release Christmas/New Year Fund Appeal

If a quarter of a million UK patients were ignored by the healthcare system, left to research their own disease, subjected to establishment-controlled discrimination, offered only deleterious treatments as recommended by flawed NICE guidelines, and offered no hope of a way out from this situation due to zero funding being allocated for fundamental research into the disease – if this were true then it would be seen as a national scandal in any civilised society.

No treatments, no adequately funded research, no future for patients.

Imagine having to endure this situation for decades - losing out on life, ignored by society.

Yet it has been this way for decades for people suffering from myalgic encephalomyelitis (ME) in the UK.

UK charity Invest in ME Research wishes to change that – for good!

The charity believes that high-quality biomedical research into ME will find biomarkers and uncover the cause(s) of ME and facilitate development of treatments for the disease.

Our Christmas/New Year Fund Appeal aims to raise funds to develop a UK/European Centre of Excellence for ME that can attract researchers, physicians and healthcare staff to study and treat this disease and allow collaboration with other Centres of Excellence in other countries as the concept develops.

Invest in ME Research is an independent UK charity finding, funding and facilitating a strategy of biomedical research into ME, and promoting better education about the disease. The charity is run by volunteers - patients or parents of children with ME - with no paid staff.

The charity and its supporters have raised over £800k to fund biomedical research into ME over recent years. We need to raise more for the Centre of Excellence model.

Our 5 year plan aims to fund young/early career as well as experienced researchers and encourage research into ME who will develop the foundations for the Centre and allow continuation of this research.

With the hub of research based in Norwich Research Park, which is home to over 12,000 people including 3,000 researchers and clinicians with an annual research spend of over £130 million, the opportunities for establishing and maintaining a strategy of high-quality biomedical research into ME are obvious.

Over this Christmas and New Year period we are hoping to raise funds toward another PhD studentship and to allow more medical students to participate in research as part of building a Centre of Excellence for ME.

The charity is also exploring other ideas and continuing to emphasise international collaboration amongst biomedical researchers. Our annual international ME conference and research Colloquium continue in 2019 with the fourteenth and ninth, respectively - events responsible for establishing better education and more cooperation amongst researchers.

With our colleagues in the European ME Alliance we are establishing a voice in Europe for people with ME. We are also tackling other problems caused by this insidious disease - such as isolation of patients.

The charity has provided a voice for people with ME to challenge decisions being made that affect their lives and futures.

The Centre of Excellence is at the heart of our research efforts and is a vision that is now even being set up in USA by the National Institutes of Health.

We welcome support to help us continue to develop the Centre of Excellence for ME.

For this holiday season please support us to provide the opportunity to see that philanthropy is actually going to make a difference to people's lives.

We can enter the New Year with increased hope for people with ME and their families.



Thursday, 22 November 2018

A plea from a fallen doctor on Chronic Fatigue Syndrome (ME/CFS)

https://www.reddit.com/r/cfs/comments/6sneul/a_plea_from_a_fallen_doctor_on_chronic_fatigue/ 

[Not new but worth reading]

I was educated at Baylor and practiced medicine for 30 years. I had a thriving practice, a rich social life, and excellent physical and mental health. I loved what I did and loved my life. I ran marathons, spoke at conferences, and chaired non-profits.

I am now completely bedridden from post viral CFS.

I am writing this to beg my fellow colleagues to take this disease seriously, understand that it is 100% organic in origin, and that it can happen to anyone.

I used to see CFS patients fairly often in my practice. Some of them were quite debilitated and some semi-functional. I always tried to be sympathetic and did what I could to help, but truth be told there was always a voice in my head questioning if their symptoms were psychosomatic. At times I delayed a diagnosis because the literature told me to wait 6 months. I recommended exercise, antidepressants, and psychotherapy because that had always been the conventional wisdom. And when patients didn't come back, I subconsciously assumed they had gotten better, and that I was justified in my approach. I feel tremendous guilt about this now.

When I got the flu that started this, I thought I would be out of work for 10 days. 10 days turned into 10 weeks, and then 10 months. The virus was gone, my labs were clean, and yet I still felt horribly ill.

My symptoms:

* I could barely stand up in the shower due to orthostatic intolerance. Later my wife would have to install a shower chair

* I could not read or write due to cognitive dysfunction

* I could not walk more than 45 steps without extreme lactic build up in my muscles

* Any minor extortion would produce an intensifying of symptoms for several days

* Add on insomnia, sensitivity to noise and light, and uncharacteristic emotional lability and you understand the hell my life became

Every type of conventional medical test came back negative or could not explain symptoms. My own family thought I was crazy (not to mention my friends, cohort, and colleagues).

Of course I tried the standard things I told my patients to do. Antidepressants were hit or miss as they so often are and did not touch the core symptoms. Psychotherapy was helpful for coping. Exercise of any kind was a complete unmitigated disaster that severely and permanently worsened my state.

Finally I did find lab abnormalities. Cytokines. Krebs cycle metabolites. Near zero ADH. As I lay bed-bound I slowly regained the ability to process complex data, and I poured through the research and discovered that yes this is a very real illness with organic abnormalities documented as early as 1932. Why aren't we taught this in medical school?

I tried antivirals, antibiotics, hormone replacement, and yes I'll admit, even some more questionable alternative medicine protocols. Nothing worked.

Finally I went into remission using a combination of monoclonal antibodies (Rituxan, Cosyntex, Enbrel). Remission was glorious. I took my wife to Costa Rica, played with my grandchildren, and learned how to sail. And then I relapsed for no good reason and hell returned. As of yet I have been unable to reproduce the first remission.

I beg other doctors to take this to heart. CFS is a real disease, as bad as end stage AIDS or cancer. It is also treatable, but only through trial and error, and even then nothing is guaranteed.

Monday, 12 November 2018

The trial of your faith

http://bible.christiansunite.com/Morning_and_Evening/chme1112.shtml

C H Spurgeon's Morning Devotional for 12th November

"The trial of your faith."

1 Peter 1:7

Faith untried may be true faith, but it is sure to be little faith, and it is likely to remain dwarfish so long as it is without trials. Faith never prospers so well as when all things are against her: tempests are her trainers, and lightnings are her illuminators. When a calm reigns on the sea, spread the sails as you will, the ship moves not to its harbour; for on a slumbering ocean the keel sleeps too. Let the winds rush howling forth, and let the waters lift up themselves, then, though the vessel may rock, and her deck may be washed with waves, and her mast may creak under the pressure of the full and swelling sail, it is then that she makes headway towards her desired haven. No flowers wear so lovely a blue as those which grow at the foot of the frozen glacier; no stars gleam so brightly as those which glisten in the polar sky; no water tastes so sweet as that which springs amid the desert sand; and no faith is so precious as that which lives and triumphs in adversity. Tried faith brings experience. You could not have believed your own weakness had you not been compelled to pass through the rivers; and you would never have known God's strength had you not been supported amid the water-floods. Faith increases in solidity, assurance, and intensity, the more it is exercised with tribulation. Faith is precious, and its trial is precious too.

Let not this, however, discourage those who are young in faith. You will have trials enough without seeking them: the full portion will be measured out to you in due season. Meanwhile, if you cannot yet claim the result of long experience, thank God for what grace you have; praise Him for that degree of holy confidence whereunto you have attained: walk according to that rule, and you shall yet have more and more of the blessing of God, till your faith shall remove mountains and conquer impossibilities.

Monday, 5 November 2018

The PACE Trial - A Short Explanation by Graham McPhee

The PACE Trial - A Short Explanation by Graham McPhee. Part 3 – Why it matters. 



The PACE Trial - A Short Explanation by Graham McPhee. Part 4 – Where do we go from here? 



Thursday, 1 November 2018

Grandma with severe Chronic Fatigue Syndrome misses daughter's wedding and grandchildren's childhoods

https://www.getsurrey.co.uk/news/surrey-news/grandma-severe-chronic-fatigue-syndrome-15311621

The cruel condition affects 250,000 people in the UK

By John Siddle

An 80-year-old from Farnham has had to skip every family gathering, birthday and Christmas over the past 20 years after a shock diagnosis of a devastating ‘living death’ illness.

Nancy Collins a former NHS nurse was struck down with Myalgic Encephalomyelitis (ME) 20 years ago at the age of 60. She was just months into her retirement after a long and happy 40-year career saving lives.

The disease - also known as Chronic Fatigue Syndrome - is a chronic and fluctuating neurological condition that causes symptoms affecting many of the body's systems. It most commonly attacks the nervous and immune systems.

One in four sufferers are so severely affected that they were effectively housebound or bedbound.

Debilitated and weak, Nancy finds daily tasks so many of us take for granted impossible and was forced to miss her daughter Sarah Jackson's wedding in 2011.

She has also had to miss the childhoods of all seven of her grandchildren.

For five years, Nancy could not see anyone as she was so ill she couldn't stand to pick up the phone.

"It was soul destroying," a distraught Sarah, 46, said.

She continued: “I couldn’t see her due to the effects of her ME symptoms.

“Mum was in a lot of pain at the time. Just the brain strain of conversations with other people or even people speaking aloud in the same room was intolerable for her.

“The stress of anything outside of her routine was too much. The emotional toll of long term illness and her sadness of what she had lost and was missing out on. She just couldn't cope.”

Sarah said her mum had had a series of operations and antibiotics prior to being diagnosed.

"Within a year of retiring she started having ME symptoms and it progressively got worse and worse and worse, and she's now been housebound for about five years," she explained.

"She's 80, so it's difficult to tell what health problems she'd have had anyway.

"She has seven grandkids and only one had been born when she retired, so she has missed out on them all growing up. The youngest is nine.

"She missed my wedding, the birth of my children, every Christmas. We cannot do anything as a family anymore because she cannot have noise, light, she cannot read or do any activities at all. She cannot do anything.

"It's all just completely overwhelming for her to do anything."

She added: "Not being able to see her or speak to her for a long period of time was quite soul-destroying and was really difficult. I almost couldn't talk about it at all because it was too upsetting."

Sarah now visits her mum every couple of weeks to wash her hair - a task Nancy is too weak to manage alone.

Although she has recently started to sit in the garden and soak up some sunshine, she hasn't left the house for at least five years and is so weak, she cannot lift a bottle of milk.

Nancy was forced to stay at home when Sarah and Geoff, 44, tied the knot and watched the ceremony via a live link.

However, the sound broke, so she missed hearing their daughter declaring her vows to the love of her life.

Sarah said: "She used to say 'when you have your children I will be there' and it just couldn't happen and she couldn't be at my wedding.

"She wanted to be there, but just couldn't."

Nancy's heartbreaking daily struggle is made marginally easier by a technique known as pacing.

Sarah explains: "She has a routine and sticks to it, minute by minute. There's no moving away from the routine, it's a horrible existence for her and my father."

Every day, Nancy gets out of bed and dresses because "she thinks it's important".

"Everything is very slow and methodical," said Sarah.

Sarah is sharing the story of how ME has ripped their family apart to raise awareness of the cruel condition so little is known about.

"The problem I think is that it's not very well researched, it's difficult to get a diagnosis and there's a lot of scepticism around the condition - people think it's psychological.

"It's debilitating and those people [sufferers] are hidden, they are invisible to society.

"They lay around exhausted, and they may look alright but they're not alright."

Sarah said she believes funding difficulties and misinformation online - usually from people claiming they've been cured of ME - mean it's hard for even medical professionals to fully understand what sufferers are going through and how to help them.

"The symptoms are collective and it is a constant battle," she added.

Honorary medical advisor Charles Shepherd said: “Nancy’s story illustrates just how devastating ME can be and the effect this then has on all aspects of normal family life.

“At best, it leaves people struggling to work or go to school. At worst, it leaves them enduring a tortuous existence, a living death, where they are unable to take their place in society.

“Sadly, many doctors are still uncertain about how to make a diagnosis of ME and how to manage their illness, especially for those like Nancy who have severe ME and are housebound, or even bedbound.

“So those at the severe end of the spectrum and up being severely neglected by both health and social services."

For more information, visit meassociation.org.uk 

Wednesday, 24 October 2018

A Statement in Support of Cochrane

http://www.virology.ws/2018/10/23/a-statement-in-support-of-cochrane/

23 October 2018

By David Tuller

Cochrane has decided to temporarily withdraw a review of exercise therapies for the illness variously known as ME, CFS, ME/CFS and CFS/ME. The review reported that exercise therapy is effective in treating the illness—a finding that has provided unwarranted support for recommendations that patients should undergo the intervention known as graded exercise therapy. Yet Cochrane has found merit in complaints about serious scientific missteps and has asked the review team to respond accordingly.

Supporters of the approach to treatment endorsed by the Cochrane review have portrayed the decision for temporary withdrawal as a loss for science and an unfortunate capitulation to pressure from a vocal patient lobby. But patients have criticized the review not because they harbor anti-scientific views or are prejudiced against psychiatry. Rather, they have expressed reasonable and convincing concerns about the poor methodological choices made by the reviewers, who to date have not offered robust explanations.

We therefore believe it is important to voice our support for Cochrane’s effort to seek clarity on the issues raised not only by patients but by many others as well, including scientists, clinicians and academics. Here are some key reasons why we agree with Cochrane’s decision:

1) The PACE trial, the largest of the eight studies included in the Cochrane review, has been internationally discredited because of its outcome-switching and many other flaws. Yet the review rated the trial as being at “low risk” of reporting bias. In a recent open letter to The Lancet, more than 100 experts, including many of us, expressed concern about PACE’s “unacceptable methodological lapses.”

2) Like PACE, the other studies in the Cochrane review are open label trials relying on subjective outcomes. Trials with this design are fraught with bias, which is why they are no longer considered as reliable evidence for making decisions and developing recommendations for biomedical treatment. The review ignored objective outcomes from exercise interventions, which have generally failed to confirm subjective reports of benefits.

3) Five of the studies included in the Cochrane review used the Oxford criteria, a case definition that only requires six months of unexplained fatigue to render a diagnosis. This case definition generates heterogeneous samples that likely include many people suffering from undiagnosed depression, anxiety disorders and other fatiguing conditions rather than the devastating illness in question. When the US Agency for Healthcare Research and Quality removed Oxford criteria studies from its own analysis, the agency found no evidence to support recommendations for graded exercise therapy. This re-analysis also reported more harms among those assigned to such treatment than among those in the comparison groups.

4) Six of the studies included in the Cochrane review tested graded exercise therapy as a treatment for the illness. This intervention has been predicated on the theory that the ongoing symptoms are not caused by underlying pathophysiological processes but by a fear of activity, which in turn leads to sedentary behavior and severe deconditioning. Yet there is no legitimate scientific evidence to support this theory. A 2015 report from the US Institute of Medicine (now the National Academy of Medicine) concluded that ME/CFS is not driven by psychological factors; biomedical research from major medical centers in the US, UK, Australia and elsewhere supports that conclusion.

5) Given the many methodological and scientific problems with the Cochrane review, its conclusion that exercise therapy is effective cannot be taken at face value. This is of particular concern because it is widely accepted that the cardinal symptom of the illness is post-exertional malaise, or what the Institute of Medicine report called “exertion intolerance.” In other words, patients can suffer prolonged relapses even after engaging in minor physical activities, suggesting that graded exercise therapy is contra-indicated and could cause harm.

The reviewers need to provide substantive and satisfactory answers to Cochrane’s legitimate methodological and scientific questions. If they are unable or unwilling to do so, the review should be permanently withdrawn.


Vincent R. Racaniello, PhD
Professor of Microbiology and Immunology
Columbia University
New York, New York, USA
Host of Virology Blog

Christopher Armstrong, PhD
Bio21 Molecular Science & Biotechnology Institute
Department of Biochemistry and Molecular Biology
University of Melbourne
Melbourne, Victoria, Australia

James N. Baraniuk, MD
Professor of Medicine
Georgetown University
Washington, DC, USA

Lucinda Bateman, MD
Medical Director
Bateman Horne Center
Salt Lake City, Utah, USA

Jonas Bergquist, MD, PhD
Professor of Analytical Chemistry and Neurochemistry
Biomedical Centre
Uppsala University
Uppsala, Sweden

Charlotte Blease, PhD
Fulbright and Marie Curie Research Fellow
General Medicine and Primary Care
Beth Israel Deaconess Medical Center
Harvard Medical School
Boston, Massachusetts, USA
School of Psychology
University College Dublin
Dublin, Ireland

Bela Chheda, MD
Center for Complex Diseases
Mountain View, California, USA
Member, The ME/CFS Collaborative Research Center at Stanford
Palo Alto, California, USA

Todd E. Davenport, PT, DPT, MPH, OCS
Professor & Program Director
Thomas J. Long School of Pharmacy & Health Sciences
Department of Physical Therapy
University of the Pacific
Stockton, California, USA

Ronald W. Davis, PhD
Professor of Biochemistry and Genetics
Stanford University
Stanford, California, USA

Kenneth J. Friedman, PhD
Associate Professor of Physiology and Pharmacology (retired)
New Jersey Medical School
University of Medicine and Dentistry of New Jersey
Newark, New Jersey, USA

Robert F. Garry, PhD
Professor of Microbiology and Immunology
Tulane University School of Medicine
New Orleans, Louisiana, USA

Rebecca Goldin, PhD
Professor of Mathematics
George Mason University
Fairfax, Virginia, USA

Alan Gurwitt, MD
Clinician in Private Practice (retired)
Associate Clinical Professor
Yale Child Study Center (retired)
New Haven, Connecticut, USA
Associate Clinical Professor
University of Connecticut Dept of Psychiatry (retired)
Storrs, Connecticut, USA
Lecturer, Harvard Medical School (retired)
Boston, Massachusetts, USA

Paul M. Guyre, PhD
Professor of Microbiology and Immunology
Geisel School of Medicine at Dartmouth
Hanover, New Hampshire, USA

Maureen Hanson, PhD
Liberty Hyde Bailey Professor
Department of Molecular Biology and Genetics
Cornell University
Ithaca, New York, USA

H. Craig Heller, PhD
Professor of Biology
Stanford University
Stanford, California, USA

Brian M. Hughes, PhD, FPsSI
Professor of Psychology
National University of Ireland Galway
Galway, Ireland

David L. Kaufman, MD
Center for Complex Diseases
Mountain View, California, USA
Member, The ME/CFS Collaborative Research Center at Stanford
Palo Alto, California, USA

Betsy Keller, PhD, FACSM
Professor of Exercise & Sport Sciences
Ithaca College
Ithaca, New York, USA

Eliana Mattos Lacerda
Assistant Professor of Epidemiology
Clinical Research Department
Faculty of Infectious and Tropical Diseases
London School of Hygiene and Tropical Medicine
London, England, UK

Bruce Levin, PhD
Professor of Biostatistics
Columbia University
New York, New York, USA

Susan Levine, MD
Clinician in Private Practice
New York, New York
Visiting Fellow
Cornell University
Ithaca, New York, USA

Alan R. Light, PhD
Professor of Anesthesiology
Professor of Neurobiology and Anatomy
University of Utah
Salt Lake City, Utah, USA

Ami Mac, MD
Director of Translational Medicine
Stanford Genome Technology Center
Palo Alto, Michigan, USA

David F. Marks, PhD
Editor
Journal of Health Psychology
& Health Psychology Open
London, England, UK

Marlon Maus, MD, DrPH, FACS
DrPH Program Director
School of Public Health
University of California, Berkeley
Berkeley, California, USA

Neil R McGregor, BDS, MDSc, PhD
Clinical Associate Professor
Faculty of Medicine, Dentistry and Health Sciences
Bio21 Molecular Science & Biotechnology Institute
University of Melbourne.
Melbourne, Victoria, Australia

Patrick E. McKnight, PhD
Associate Professor of Psychology
George Mason University
Fairfax, Virginia, USA

Jose G. Montoya, MD, FACP, FIDSA
Professor of Medicine
Division of Infectious Diseases and Geographic Medicine
Stanford University School of Medicine
Stanford, California, USA
Director, Palo Alto Medical Foundation Toxoplasma Serology Laboratory
National Reference Center for the Study and Diagnosis of Toxoplasmosis
Palo Alto, California, USA

Elisa Oltra, PhD
Professor of Molecular and Cellular Biology
Catholic University of Valencia School of Medicine
Valencia, Spain

Roshini C. Pinto-Powell, MD, FACP
Associate Professor of Medicine and Medical Education
Associate Dean of Students and Admissions
Co-director of On Doctoring
Co-director of Geriatrics and Ambulatory Medicine
Geisel School of Medicine at Dartmouth
Hanover, New Hampshire, USA

Deborah Rose, MD
Emeritus Adjunct Assistant Clinical Professor of Psychiatry
Stanford University School of Medicine
Stanford, California, USA

Peter C. Rowe, MD
Professor of Pediatrics
Johns Hopkins University School of Medicine
Baltimore, Maryland, USA

Donald R. Staines, MBBS, MPH, FAFPHM, FAFOEM
Clinical Professor
Menzies Health Institute Queensland
Co-Director, National Centre for Neuroimmunology and Emerging Diseases
Griffith University
Gold Coast, Queensland, Australia

Philip B. Stark, PhD
Professor of Statistics
University of California, Berkeley
Berkeley, California, USA

Leonie Sugarman, PhD
Emeritus Associate Professor of Applied Psychology
University of Cumbria
Carlisle, England, UK

Ronald G. Tompkins, MD, ScD
Sumner M Redstone Professor of Surgery
Harvard Medical School
Boston, Massachusetts, USA

David Tuller, DrPH
Senior Fellow in Public Health and Journalism
Center for Global Public Health
School of Public Health
University of California, Berkeley
Berkeley, California, USA

Mark VanNess, PhD
Professor of Health, Exercise & Sports Sciences
University of the Pacific
Stockton, California, USA
Workwell Foundation
Ripon, California, USA

Wenzhong Xiao, PhD
Assistant Professor of Bioinformatics
Harvard Medical School
Boston, Massachusetts, USA

Carolyn Wilshire, PhD
Senior Lecturer
School of Psychology
Victoria University of Wellington
Wellington, New Zealand