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?