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