Saturday, 12 May 2018

ME Awareness Day


Whether you are aware of it or not, May is ME Awareness Month, 7th – 14th May is ME Awareness Week, and today, the 12th May, is ME Awareness Day! As a result, there has been quite a bit about ME in the media over the last week or so, and the following are a selection which you might like to take a look at. NB I wouldn’t say that I agree 100% with everything in them, but I leave you to see what you think.

BBC Newsbeat documentary “ME and me” (just under 32 minutes long)



ME/CFS Patients and Allies Are Rallying Worldwide to Demand Better Treatment



‘Missing behind closed curtains for 12 years’ – Woman describes living with ME



New Early Day Motion Launched by Carol Monaghan MP



The important reason why people are leaving shoes around cities



To the #MillionsMissing with ME/CFS, something remarkable is happening



Two films about ME can be watched on Vimeo – Voices from the Shadows (for free using the code VOICES) click here, and Unrest (not free), here. Unrest is also available on Amazon Video or as a DVD.

Just in case you are wondering, the 12th May was chosen as ME Awareness Day because it is the birthday of Florence Nightingale, who was believed to have suffered from ME.

Wednesday, 9 May 2018

ME Association: ‘ME Awareness Week 2018’ New Early Day Motion Launched by Carol Monaghan MP

http://www.meassociation.org.uk/2018/05/me-awareness-week-2018-new-early-day-motion-launched-by-carol-monaghan-mp-09-may-2018/

‘ME Awareness Week 2018’ New Early Day Motion Launched by Carol Monaghan MP | 09 May 2018

An early day motion has been launched by Carol Monaghan MP, and she needs your help in asking other MPs to sign the motion increasing the chance it will lead to an actual debate in parliament.

What is an early day motion?

Early day motions (EDMs) are motions submitted for debate in the House of Commons for which no day has been fixed. As there is no specific time allocated to EDMs very few are debated. However, many attract a great deal of public interest and media coverage.

EDMs are used to put on record the views of individual MPs or to draw attention to specific events or campaigns. Topics covered by EDMs vary widely. By attracting the signatures of other MPs, they can be used to demonstrate the level of parliamentary support for a particular cause or point of view.

What is this EDM all about?

The new EDM draws attention to ME Awareness Week and it is hoped that it will attract the signatures from those MPs who have an interest in M.E. or whose constituents have raised it as an issue with them.

Early day motion 1247

ME AWARENESS WEEK 2018

Session: 2017-19

Date tabled: 08.05.2018

Primary sponsor: Monaghan, Carol


“That this House recognises Myalgic Encephalomyelitis (ME) Awareness Week from 6 to 12 May 2018, which aims to aims to highlight the impact this invisible illness has on 250,000 people across the UK; recognises the fantastic work campaigners and charities are doing to highlight ME as a physical condition which is not all in the mind; acknowledges the detrimental effect of the PACE trials and its results, and the work which is being done to reverse this; and encourages people to go blue for ME across the week, to further bring this illness out of the shadows and into the spotlight.”

The idea is that the more signatures this EDM attracts the greater the chance of an actual debate taking place in parliament on particular issues relating to M.E. Such issues are likely to be:

Medical Education
Need for an Early and Accurate Diagnosis
NICE guideline review
The PACE trial
NHS services postcode lottery
Problems relating to children (child care facilities)
Severe ME (lack of domiciliary services and specialised units and difficulties accessing social care)
DWP benefits
Biomedical research

Write to your MP

The ME Association, #MEAction and other charities have been working together to provide a comprehensive briefing document for those MPs who are interested, and we hope that with your help we can persuade more to sign the EDM and express their interest in a further debate.

So, please write or email your MP and ask them to support this EDM explaining why, in your own words, these issues are so important. You can find your MP’s details by visiting the parliament website and entering their name or your postcode.

Your letter or email need not be long or involved. This template might help, but feel free to personalise. Some people feel that a written (even typed) letter sent in the post achieves a better result, but choose whatever means is easiest for you.

Dear (Insert MP name here),

I am writing to ask that you sign EDM 1247, in support of ME Awareness Week.

As your constituent, this issue is very important to me, and I would be grateful if you could lend your support to this EDM.

(Insert personal message)

Kind regards,

(Insert constituent name)

(Make sure to include full name and address when signing off, i.e:

Joe Bloggs
123 House Avenue
London
X12 Y34)

Saturday, 5 May 2018

I will be their God, and they shall be My people

http://bible.christiansunite.com/Morning_and_Evening/chme0505.shtml

C H Spurgeon's Morning Devotional for 5th May

"I will be their God, and they shall be my people."

2 Corinthians 6:16

What a sweet title: "My people!" What a cheering revelation: "Their God!" How much of meaning is couched in those two words, "My people!" Here is speciality. The whole world is God's; the heaven, even the heaven of heavens is the Lord's, and He reigneth among the children of men; but of those whom He hath chosen, whom He hath purchased to Himself, He saith what He saith not of others-"My people" In this word there is the idea of proprietorship. In a special manner the "Lord's portion is His people; Jacob is the lot of His inheritance." All the nations upon earth are His; the whole world is in His power; yet are His people, His chosen, more especially His possession; for He has done more for them than others; He has bought them with His blood; He has brought them nigh to Himself; He has set His great heart upon them; He has loved them with an everlasting love, a love which many waters cannot quench, and which the revolutions of time shall never suffice in the least degree to diminish. Dear friends, can you, by faith, see yourselves in that number? Can you look up to heaven and say, "My Lord and my God: mine by that sweet relationship which entitles me to call Thee Father; mine by that hallowed fellowship which I delight to hold with Thee when Thou art pleased to manifest Thyself unto me as Thou dost not unto the world?" Canst thou read the Book of Inspiration, and find there the indentures of thy salvation? Canst thou read thy title writ in precious blood? Canst thou, by humble faith, lay hold of Jesus' garments, and say, "My Christ"? If thou canst, then God saith of thee, and of others like thee, "My people;" for, if God be your God, and Christ your Christ, the Lord has a special, peculiar favour to you; you are the object of His choice, accepted in His beloved Son.

Tuesday, 1 May 2018

Pharmacological activation of AMPK [AMP-activated protein kinase] and glucose uptake in cultured human skeletal muscle cells from patients with ME/CFS

http://www.meresearch.org.uk/our-research/completed-studies/pharmacological-activation-of-ampk/

Authors
Audrey E Brown, Beth Dibnah, Emily Fisher, Julia L Newton and Mark Walker

Institutions
Institute of Cellular Medicine, Newcastle University; Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK

Abstract
Background: Skeletal muscle fatigue and post-exertional malaise are key symptoms of Myalgic Encephalomyelitis (ME/CFS). We have previously shown that AMPK activation and glucose uptake are impaired in primary human skeletal muscle cell cultures derived from patients with ME/CFS in response to electrical pulse stimulation, a method which induces contraction of muscle cells in vitro. The aim of this study was to assess if AMPK could be activated pharmacologically in ME/CFS.

Methods: Primary skeletal muscle cell cultures from patients with ME/CFS and healthy controls were treated with either metformin or 991. AMPK activation was assessed by Western blot and glucose uptake measured.

Results: Both metformin and 991 treatment significantly increased AMPK activation and glucose uptake in muscle cell cultures from both controls and ME/CFS. Cellular ATP content was unaffected by treatment although ATP content was significantly decreased in ME/CFS compared to controls.

Conclusions: Pharmacological activation of AMPK can improve glucose uptake in muscle cell cultures from patients with ME/CFS. This suggests that the failure of electrical pulse stimulation to activate AMPK in these muscle cultures is due to a defect proximal to AMPK. Further work is required to delineate the defect and determine whether pharmacological activation of AMPK improves muscle function in patients with ME/CFS.

Publication

Funding
The work was funded by ME Research UK and supported by the NIHR Newcastle Clinical Research Facility.

Comment by ME Research UK
Abnormal muscle fatigue is one of the most common symptoms reported by people with ME/CFS, and can occur even after periods of only mild exercise.

Since 2006, ME Research UK has provided pilot funding for a number of projects at Newcastle University exploring the mechanisms underlying this symptom, and one key study took a close look at muscle cell function using biopsies obtained from ME/CFS patients.

These muscle cells were cultured and examined in standardised laboratory conditions by applying a series of electrical pulses to simulate the muscle contraction that occurs during exercise.

The researchers found that the activation of AMP-activated protein kinase (AMPK) and the uptake of glucose were both impaired in these cells. AMPK has an important role in regulating energy in the cell and is normally activated during muscle contraction, while glucose is an important energy source.

Although AMPK was not activated by simulated muscle contraction in these cells from ME/CFS patients, later experiments indicated that it could be activated by treatment with metformin. This raises the possibility of whether a drug such as this could improve muscle function in patients.

To look at these abnormalities in more detail, and potentially to trace where they occur in the signalling pathway, the Newcastle team began a series of experiments funded by ME Research UK.

The first part of this work, published in Bioscience Reports, used a similar methodology to that in their previous study to investigate whether AMPK and glucose uptake in muscle cells from ME/CFS patients could be activated by treatment with pharmacological agents.

Skeletal muscle cells were obtained from eight patients with ME/CFS and from seven healthy control subjects. The cultured cells were then treated with metformin or with compound 991. Metformin is a drug commonly used to treat diabetes, and is known to activate AMPK indirectly via other mechanisms. Compound 991, on the other hand, was designed specifically as a direct activator of AMPK.

Treatment with metformin increased both AMPK activation and glucose uptake, and this was true for muscle cells from ME/CFS patients and from healthy control subjects. Similarly, compound 991 treatment also significantly increased both parameters in patient and control cells, and the effect on glucose uptake was similar to that expected following treatment with insulin.

Therefore, while AMPK in muscle cells from ME/CFS patients is not activated by electrical stimulation of the cells, it can be activated pharmacologically, and there are two important conclusions that might be drawn from these findings.

Firstly, this abnormality in signalling can potentially be bypassed by pharmacological treatment, and the investigators suggest that this adds further support to the idea of conducting a clinical trial of an AMPK activator in ME/CFS patients. Secondly, their results indicate that the signalling defect lies further up the molecular chain, possibly involving upstream enzymes such as LKB1 or CaMKK.

These findings represent the fascinating first steps of this project, which will continue to look more closely at the mechanisms underlying muscle fatigue in ME/CFS, and hopefully to identify potential targets for therapy.

Saturday, 21 April 2018

Forward ME – Meeting with Dr Diane O’Leary about possible WHO coding changes


ME Association - Forward ME – Meeting with Dr Diane O’Leary about possible WHO coding changes - 21 April 2018


Forward ME

Notes of meeting held on Wednesday 28 March 2018

1. Apologies

Hannah Clifton ME Trust, Dr Paul Worthley ME Trust, Dr Gareth Tuckwell ME Trust, Bill and Janice Kent ReMEmber, Cath Ross 25% ME Group, Tony Crouch 25% ME Group, Christine and Tanya Harrison BRAME.

2. Present

Carol Monaghan MP, Dr William Weir, Dr Charles Shepherd ME Association, Jane Colby Tymes Trust, Sarah Reed #MEAction, Clare Ogden Action for ME, Countess of Mar (Chairman).

3. Science Media Centre

There was discussion about the Science Media Centre Factsheet “CFS/ME – The illness and the controversy” which was published on the SMC website on 20 March 2018. It was agreed that the Chairman would write to the Chief Executive and to the Chair of the trustees of the SMC to object to the inaccuracies and distortions and to request that the factsheet be retracted.

4. Dr Diane O’Leary

Dr O’Leary presented a paper on the move within the WHO International Classification of Disease team working on the ICD11 revision to reclassify a number of disorders previously grouped as MUS (medically unexplained symptoms) into one large symptom cluster with criteria that would be used in primary care and which would ensure that all patients who qualified would be offered mental health care rather than medical care. None of these criteria were evidence-based.

(See “Bodily Stress Syndrome” info sheet).

The group discussed Dr O’Leary’s concerns and various actions were suggested. These included:
  • Publication of the info sheet on Forward-ME website with members either linking to it or publishing it themselves. It was agreed that this would not be done until after 12 April 2018 as there were to be discussions with the WHO.

(N.B. Subsequently, it was decided between the Chairman and Dr O’Leary to publish the info sheet as it was important that the information be disseminated as soon as possible).
  • The Royal Colleges of Physicians and of General practitioners might not be aware of the effects that this reclassification would have on their members’ diagnosis of patients’ symptoms so the Chairman agreed to write to them.

  • Other organisations representing people with MUS should be alerted so that, if they wish, they can make representations to the WHO. The Chairman would find as many of them as possible.

It was agreed that there should be another meeting soon so that further activities could be organised.

Note: A further communication about the possible changes to WHO coding has subsequently been placed on the Forward ME website dated 9 April 2018.

5. Any other business

Christine Harrison reported to the Chairmen that she was in regular contact with staff from Capita and that they were working on a new training programme for health professionals.

Charles Shepherd said that he was doing the same with Maximus.

Bill and Janice Kent asked that they be involved in any action that was to be taken with regard to BSS.

6. Date of next meeting

The next meeting would be held at 2.00 pm on Tuesday 1 May 2018.

Monday, 16 April 2018

Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, and Systemic Exertion Intolerance Disease: Three Distinct Clinical Entities



Frank N.M. Twisk

Abstract

Many researchers consider chronic fatigue syndrome (CFS) to be a synonym of Myalgic Encephalomyelitis (ME). However, the case criteria of ME and CFS define two distinct clinical entities. Although some patients will meet both case criteria, other patients can meet the diagnosis of ME and not fulfil the case criteria for CFS, while the diagnosis of CFS is largely insufficient to be qualified as a ME patient. ME is a neuromuscular disease with distinctive muscular symptoms, including prolonged muscle weakness after exertion, and neurological signs implicating cerebral dysfunction, including cognitive impairment and sensory symptoms. The only mandatory symptom of CFS is chronic fatigue. Chronic fatigue must be accompanied by at least four out of eight nonspecific symptoms: substantial impairment in short-term memory or concentration, a sore throat, tender lymph nodes, muscle pain, multijoint pain, a new type of headaches, unrefreshing sleep, and postexertional “malaise” lasting more than 24 h. So, regardless whether the name ME is appropriate or not, ME is not synonymous to CFS. That is not a matter of opinion, but a matter of definition. Due to the definitions of ME and CFS, “ME/CFS” does not exist and cannot be replaced by a new clinical entity (SEID: Systemic Exertion Intolerance Disease), as recently suggested. View Full-Text

Friday, 13 April 2018

I Am Stuck In The Prison That Is ME

Ellie Bunce 

https://www.huffingtonpost.co.uk/entry/i-am-stuck-in-the-prison-that-is-me_uk_5acf4ab8e4b0648767777931

I had hopes of being an Olympian - now I’m bed-bound with an illness some people think doesn’t exist. 

ME, two simple letters that can rip apart everything you worked for and everything you ever dreamt of.

Myalgic encephalomyelitis is a soul destroying disease that leaves so many bedridden without anyone knowing.

I’ve had ME for two years now after coming down with glandular fever in Easter 2016. At the time I was 19, a student athlete - in my second year of university - with hopes of rowing internationally. I was fit, active, I ate well, I exercised. I was happy and positive and yet one day I woke feeling as if I was dying. It was like my whole body ached, in a way I’d never felt before - I felt drained of everything I had. I knew instantly something was wrong.

After calling 111 it was thought I had meningitis and an ambulance took me to A&E where various tests showed I had nothing wrong and was sent home with a suspected viral infection. However, that evening my tonsils went bright white and swelled so much I couldn’t breathe or swallow. Again I called 111 and was sent to an out of hours doctor where I was told I had tonsillitis.

A course of antibiotics cleared up my throat but I never felt the same again. Training was hard, I was always in pain and out of breath. After a week my tonsils flared up again. This time I was told in was glandular fever and to rest.

Months and months went past and I never got better.

Eventually it was thought I had chronic fatigue syndrome (ME). Since then I’ve spiralled downhill, getting more poorly everyday. From what I know, ME is an inflammation in my brain and nervous system which has left me in excruciating chronic pain, poor cognitive function, a weakened immune system and chronically fatigued.

Day to day every inch of my body is in pain, I struggle to read and concentrate, I’m sick, I’m too tired to move, bright lights hurt my eyes, loud noises hurt my head. I spend upwards of 20 hours in bed a day in order not to “crash”. In my crashes, I scream in pain, unable to talk, or move. My whole body shakes, my eyes roll. It’s like my whole body is screaming at me to stop.

Some days, when I feel a little better for an hour or two, I’ll see a friend. I look well. Nothing looks wrong with me. They don’t see me lying in bed screaming in pain. No one understands what truly goes on behind closed doors. People will ask me if I feel a bit tired. Or stare at me if I stand up after using a wheelchair. I’m questioned if it’s my mental health. If I’m lazy.

Have you ever laid in bed and felt so ill that you truly thought you were going to die?

ME is a hugely misunderstood and unheard of illness.

For years it was misdiagnosed and not believed. I’ve struggled with various doctors not understanding the condition and suggesting treatment, which in fact, made me worse. The first ‘specialist’ I saw suggested it was my personality.

He said, I should make more effort to wake up at 9am get showered, dressed and then go on a long walk. This was my ‘treatment plan’. However, the more I pushed myself to get out of bed, the more ill I got.

Imagine how you would feel if haven’t slept in three days, you caught the flu, had the worst hangover of your life - and you had to run a marathon feeling like this. This is how I feel everyday.

Having ME can leave me feeling invisible, unheard and misunderstood. It has lead to me developing various other conditions, such as depression, anxiety, eczema, migraines and tonsillitis. Because my immune system has been weakened I also regularly get viral infections on top of this.

My mind often wonders what I wish I could do if I wasn’t ill. I am stuck in the prison that is ME. When you are stripped of your hobbies, talents, energy and work then who do you become?

ME has made me become stronger mentally. I now find joy in the little things - a cuddle with my puppy, the blue sky, the sound of birds singing, the warm sun on my face.

I extremely grateful for all my family, relatives and the close friends who understand. I know it is hard for them to see me crumble into a shell of my former self. I live in the hope that one day doctors will find a treatment, one day there will be funding for more research, and one day I will be better.

The ME Association is at the forefront of improving access to care, treatment and research and removing the disease’s stigma.

MEA medical adviser Charles Shepherd said: “Several quality of life research studies have shown that the level of disability in ME can be just as great than many other serious medical conditions, including cancer and multiple sclerosis.

“While some some people with ME do improve over the course of time, it is only a small minority that return to full normal health.

“Despite being recognised by the World Health Organisation as a neurological disease, and a report from the Chief Medical Officer of Health calling for more research and a network of hospital based clinics, many doctors still don’t know how to diagnose and manage ME/CFS and lack or research means that we still don’t have any effective forms of treatment.

“This is a completely unacceptable situation for a disease that is twice as common as multiple sclerosis and where a new report has estimated that is costing the UK economy around £3.5 billion in lost taxes, healthcare and benefit costs.”

For more information on ME, or to donate towards research, visit the ME Association website: www.meassociation.org.uk