May 2019 - Awareness Week including Millions Missing

Sly Saint · Feb 13, 2019

Australia:
International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) including myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS)
Sandgate Town Hall will be lit up Blue for International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) including myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS). This light up has been organised by ME CFS Fibromyalgia Support Association QLD. Venue: Sandgate Town Hall, Sandgate. Friday, May 10, 2019.
International Awareness Day for Chronic Immunological and Neurological Diseases
Brisbane City Hall will be lit Blue to support International Awareness Day for Chronic Immunological and Neurological Diseases. This Light Up is organised by ME/ CFS/ Fibromyalgia Support Association QLD Inc. Venue: Brisbane City Hall, Brisbane City. Sunday, May 12, 2019 – Monday, May 13, 2019.

UK:
ME Awareness Week

Going Blue for M.E.!

This is the one week of the year when everyone we know puts all their valuable energy into telling the world that M.E. is a real and physical disease.

ME Awareness Week will run from 6th to 12th May 2019 with many activities focused on ME Awareness Day itself (Sunday 12th May).

Our fundraising team will work with you to help ensure your event is the best it can be.

We will also provide practical support in the form of leaflets, balloons, collection boxes, posters and our iconic t-shirts.

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https://www.meassociation.org.uk/get-involved/me-awareness-week/

(note: this year, like last year, it coincides with Mental Health awareness week in the UK,which in the US is in Oct. So again, it is very unlikely that any events will be picked up in the UK unless a different strategy is adopted or more is made of it being a Global campaign.) @EspeMor

EspeMor · Mar 4, 2019

Sly Saint said: ↑

Australia:
International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) including myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS)
Sandgate Town Hall will be lit up Blue for International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) including myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS). This light up has been organised by ME CFS Fibromyalgia Support Association QLD. Venue: Sandgate Town Hall, Sandgate. Friday, May 10, 2019.
International Awareness Day for Chronic Immunological and Neurological Diseases
Brisbane City Hall will be lit Blue to support International Awareness Day for Chronic Immunological and Neurological Diseases. This Light Up is organised by ME/ CFS/ Fibromyalgia Support Association QLD Inc. Venue: Brisbane City Hall, Brisbane City. Sunday, May 12, 2019 – Monday, May 13, 2019.

UK:
ME Awareness Week

https://www.meassociation.org.uk/get-involved/me-awareness-week/

(note: this year, like last year, it coincides with Mental Health awareness week in the UK,which in the US is in Oct. So again, it is very unlikely that any events will be picked up in the UK unless a different strategy is adopted or more is made of it being a Global campaign.) @EspeMor
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Noted @Sly Saint ! Though if I'm not mistaken Mental Health awareness week is a week before ME awareness week. That does not mean that the press will care about this difference though, so will take that into account!

Andy · Apr 8, 2019

MEActions MillionsMissing page, check to see if there is an event in your area, https://my.meaction.net/calendars/millionsmissing

Andy · Apr 27, 2019

https://twitter.com/user/status/1121956505652056064

In recognition of International ME/CFS Awareness Day on May 12th, The Mighty asks, "what do you wish others understood about what it’s like to have ME/CFS?"

Reply and let us know.
Your response may be used in an upcoming article.
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Andy · May 5, 2019

Millions of missing people are about to reappear for a week
https://www.thecanary.co/uk/analysi...ssing-people-are-about-to-reappear-for-a-week/

Andy · May 5, 2019

Steve Topple talks to Tina Rodwell, and also covers Millions Missing in his podcast this week, https://www.thecanary.co/podcasts/2019/05/05/canarypod-topple-uncaged-s2-ep2/
(I've not listened to it so I'm not sure what is said)

Sly Saint · May 5, 2019

Andy said: ↑

Steve Topple talks to Tina Rodwell, and also covers Millions Missing in his podcast this week, https://www.thecanary.co/podcasts/2019/05/05/canarypod-topple-uncaged-s2-ep2/
(I've not listened to it so I'm not sure what is said)
Click to expand...

Interview with Tina Rodwell starts around 9.30 ends 24.00 (before then music and political stuff); not sure about the accuracy of the 'facts'. Around 17.00 talk about #Millionsmissing, POTS (postural orthostatic tachycardia syndrome), NICE guidelines.

after that it's all re news/politics generally (he speaks very fast and don't think pwme will find it easy to listen to) then new artists/music.

Andy · May 5, 2019

For the second year(?) running, the supporters of German football team Hertha Berlin have shown their support of pwME.

ME / CFS: 300,000 sufferers can not be ignored!

And again a year is up. Also this year, as Gruppa Süd Berlin, we want to take some interest in the fate of ME / CFS sufferers worldwide. Every year on the 12th of May, the international ME / CFS Memorial Day takes place. This is our opportunity to express solidarity with all sufferers and those affected and demand more education, more research and treatment from all concerned.Here are politics, science but also the practicing medicine in demand.

The Charité in Berlin has already taken on a special role in Germany in recent years, as at the local immunodeficiency ambulance with Prof. Carmen Scheibenbogen and her team an expert for ME / CFS acts. Many affected people found their way to the Charité. So many that ultimately only patients from Berlin and Brandenburg could be examined. Comparable facilities do not exist in Germany.
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German, http://www.gruppa-sued.de/wordpress/?p=2282
Google translate to English, https://translate.google.co.uk/translate?sl=de&tl=en&u=http://www.gruppa-sued.de/wordpress/?p=2282

Cinders66 · May 6, 2019

Andy said: ↑

Millions of missing people are about to reappear for a week
https://www.thecanary.co/uk/analysi...ssing-people-are-about-to-reappear-for-a-week/
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Are they though. I have t seen the main uk charities promote this activism on their social media? Isn’t that a problem? Does #MM have chance to reach maximum potential (numbers matter). if it’s not promoted by all as a collective effort or can they reach enough with supporters generated from previous years? I know theres more planned this year but at a national press level, which to get change we need to reach, will there be enough? I see on MEA fAcebook their chairman questioning why given the suffering there is not more done, but i would argue purely telling stories on awareness week as they do every year and not basically encouraging protest, isn't enough and might be why.

Andy · May 7, 2019

In the first of six daily podcasts, I caught up with campaigner and mother of a child with ME, Tina Rodwell. We discussed how the disease affects children, how government departments deal (or don’t) with them and their families, and the countless barriers and prejudices they face.
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https://www.thecanary.co/podcasts/2...aged-meets-the-millions-missing-tina-rodwell/

MSEsperanza · May 14, 2019

In Germany, the media coverage of ME has hugely improved since the "Deutsche Gesellschaft für ME/CFS" entered the stage. Even though it seems to me the DG generally tend to over-interpret the findings of biomedical research--now the nanoneedle results--, and journalists appear to be happy with their interpretations, this is still much better than what we had before.

The publication of the Stanford nanoneedle test seems to be a welcome attention-getter for sympathetic media coverage of the ME awareness week.

1) The weekly magazine Focus' online edition about a young woman with ME:

Chronisches Fatigue-Syndrom: Es fing mit Halsschmerzen an. Heute ist Karin Münster unheilbar krank (Autorin: Janina Schrupp), Focus online, 05.05.2019

(Chronic Fatigue Syndrome: It started with a sore throat. Today Karin Münster is incurably ill.)

https://www.focus.de/gesundheit/rat...rin-muenster-unheilbar-krank_id_10665083.html

Google translation (edit: for some reason the headline isn't translated, but the text body is)
https://translate.google.com/translate?hl=de&tab=TT&sl=de&tl=en&u=https://www.focus.de/gesundheit/ratgeber/gelenkschmerzen/es-fing-mit-halsschmerzen-an-heute-ist-karin-muenster-unheilbar-krank_id_10665083.html

2) (no link to the Stanford study) The newspaper Die Welt brought an interview with Prof. Carmen Scheibenbogen, Charité Berlin

Chronic Fatigue Syndrome: „Sport ist das Schlimmste, was man Patienten empfehlen kann“
(Sport is the worst thing to recommend to a patient)

"Müdigkeit, Erschöpfung und Schmerzen sind Anzeichen für das chronische Fatigue-Syndrom. Lange hielt man es für eine psychische Störung - doch es gibt eindeutige Hinweise auf körperliche Auslöser, sagt eine Expertin. Sie macht Betroffenen Hoffnung."

(Fatigue, exhaustion and pain are signs of chronic fatigue syndrome. For a long time it was thought to be a mental disorder - but there are clear indications of physical triggers, says one expert. She gives hope to those affected.)

DIE WELT, 30.04.2019, Nr. 100, S. 20 / Ressort: WISSENSCHAFT (by Caroline Ring), https://www.welt.de/gesundheit/plus192685959/Chronic-Fatigue-Syndrom-Eine-Erkrankung-der-Nerven.html

Paywalled , so just a snippet (deepl translated):

Around 300,000 people in Germany suffer from chronic fatigue syndrome (CFS). However, this is only an estimate, because in many cases the mysterious disease remains undetected. An expert says that it often affects particularly capable people and warns against false diagnoses. In real CFS, for example, sport is the worst thing patients can be advised to do.

Q: Many patients with chronic fatigue syndrome say on their own that they suffer from the disease, although a doctor has never made this diagnosis.

Carmen Scheibenbogen:

Because the knowledge of doctors about the disease is often very low. CFS has long been misclassified as a mental illness and called in one breath with burn-out. It is often misdiagnosed as depression, or it is said that these are people who do not cope well with stress. On the one hand, CFS comprises many symptoms, on the other hand, there are few objectively tangible indications of the disease in the patients.
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Q: Suppose you have not been able to get going for days and are constantly exhausted. Is that CFS?

No.[...] CFS must be clearly distinguished from this type of exhaustion. The name is certainly misleading: CFS used to be called chronic fatigue syndrome, so not only many patients but also many doctors have equated any form of chronic fatigue with CFS. Today, on the other hand, people often speak of ME, myalgic encephalomyelitis, to avoid the term "chronic fatigue".
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Translated with www.DeepL.com/Translator

Edit: I think this is a very good interview for the most part. However, also strange statements are made, for example:

"Two studies have shown that rituximab can help many patients to recover completely without permanent damage. Recently, a large study was carried out, but unfortunately it was negative. This may have been due to the fact that only half the dose of the drug was administered. We also did a small study with immunoglobulins at the Charité - some of the patients benefited from this as well."

Translated with www.DeepL.com/Translator

3) The Free State of Bavaria's public service broadcasting, BR :
Möglicher Bluttest für Chronisches Fatigue Syndrom, BR24, 06.05.2019, by Yvonne Maier, https://www.br.de/nachrichten/wisse...er-chronisches-fatigue-syndrom-me-cfs,RPgmUEL

English: Potential blood test for Chronic Fatigue Syndrome, BR24, 06.05.2019, by Yvonne Maier

(Google translator didn't work, so I will insert a translation in the follwing post).

MSEsperanza · May 8, 2019

The Free State of Bavaria's public service broadcasting, BR :

Möglicher Bluttest für Chronisches Fatigue Syndrom, BR24, 06.05.2019, by Yvonne Maier, https://www.br.de/nachrichten/wisse...er-chronisches-fatigue-syndrom-me-cfs,RPgmUEL

Potential blood test for Chronic Fatigue Syndrome ME/CFS
BR24, 06.05.2019, (broadcast 08.05.) by Yvonne Maier (Deepl translated)

Potential blood test for Chronic Fatigue Syndrome ME/CFS

In Germany, up to 300,000 people suffer from ME/CFS - Chronic Fatigue Syndrome. Many of them are bedridden and the disease is difficult to treat. In the USA, a blood test has now been developed for the first time that raises hopes.

Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a treacherous disease. On the one hand, because it is often not diagnosed or diagnosed too late by doctors, and on the other, because it severely restricts the lives and well-being of those affected. 75 percent of those affected are unable to work or can no longer attend school, 25 percent are so severely affected that they are rarely able to leave home and are even bedridden. In total, more women than men fall ill and children are also affected.

Typical symptoms of ME/CFS
1. flu symptoms that do not improve over months
2. headaches and concentration problems
3. post-exertional malaise or a stress intolerance: even a small effort can lead to a physical breakdown from which the affected person cannot recover for days, weeks or months.
4. disturbances in balance or blood pressure
5. exhaustion, also night sleep does not lead to a recovery
6. sensitivity to noises, light, touching
7. food intolerances

Translated with www.DeepL.com/Translator
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After one year the diagnosis ME/CFS

Also Katharina Herr has ME/CFS, her medical history is typical. In February 2015 she is on sick leave because of an infection - and a few weeks later she was unable to walk 30 meters. No one could tell her for a long time what she was ill with. Today she is temporarily retired, at just 30 years of age.
"I had been through about a year of a medical marathon before I got the diagnosis CFS at the Charité Berlin. And that really makes me one of the fast ones. My advantage was that I already came across the disease on the Internet, and then was lucky enough to find a family doctor who believed me and was open to the subject. Which really isn't self-evident." Katharina Herr, ME/CFS affected person
Although Chronic Fatigue Syndrome has been defined by the WHO as a neurological disease with biological causes since the late 1960s, many physicians mistakenly regard it as psychosomatic or psychological. The problem is that so far, ME/CFS can only be identified by a symptom picture - and that means that a doctor needs to be familiar with the disease.

"Fatigue, pain is all relatively general, you can also have it with other diseases. Of course, there are already very characteristic symptoms such as stress(*) intolerance, but even this is sometimes seen in other chronic diseases such as autoimmune diseases." Prof. Carmen Scheibenbogen, Head of Immunodeficiency Outpatient Clinic, Charité Berlin
(*) "Belastung" = exercise, stress
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Blood test developed for ME/CFS

Researchers from Stanford University in the USA have now for the first time presented a blood test that was able to reliably distinguish samples from ME/CFS patients from healthy ones.
"That was the most important thing for us: If you have a clear signal in the test - then you have ME/CFS." Dr. Ron Davis, Stanford University, USA
A total of 40 blood samples were tested, twenty from healthy persons and twenty from sick persons. A small study with preliminary results.
"A diagnostic marker would show not only that someone is ill, but also what disease they have. This means that in the worst case, this test also shows such a change in many other diseases." Prof. Carmen Scheibenbogen, Head of Immunodeficiency Outpatient Clinic, Charité Berlin
That's why Ron Davis and his team will soon start testing other blood samples as well.
"It would be great, it would be a huge relief for all concerned, actually everyone is waiting for an objective proof, a simple test to diagnose the disease. An additional burden and pressure in addition to the disease is that you constantly have to explain and justify yourself. You just look healthy and then the laboratory results are ok, and many doubt that you are really ill." Katharina Herr, ME/CFS patient
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Energy metabolism is faulty with ME/CFS
ME/CFS is also being researched at the University of Würzburg. The focus here is on the mitochondria of body cells. Mitochondria are the "energy power plants" of our body, they convert the inhaled oxygen into the body's own energy currency ATP. It is already clear today that this energy metabolism is confused in ME/CFS patients. As with a bad mobile phone battery, the energy supply is no longer recharged.
"We believe that in ME/CFS patients the Mitochondrien are driven down - released by a virus infection. Dr. Bhupesh Prusty, Würzburg

For example, this could be a herpes virus, flu virus or the Epstein Bar virus. According to the microbiologist, this could even have an effect if no viruses can be detected in the blood. He has allowed healthy cells to grow in the blood plasma of ME/CFS patients, and Katharina Herr has also given a sample of this kind.
The result: In ME/CFS blood plasma, a healthy cell suddenly behaves like a sick cell. Bhupesh Prusty suspects that only a few cells are infected with the viruses, but that the viruses send signals to other cells so that they shut down their mitochondria. This would be a survival strategy for the viruses because mitochondria are also important for the body's own defence system.

Too little research funding for ME/CFS
But it may take a while before further results can be expected from Würzburg. Research on ME/CFS is massively underfunded both worldwide and in Germany. And that with around 300,000 patients in Germany, that is more patients than with multiple sclerosis.
"In Germany, there is no money, no funding for ME/CFS. It simply has no priority." Dr. Bhupesh Prusty, University of Würzburg
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An international action week for ME/CFS will therefore take place from 5 to 12 May. There will be events all over the world, also in Munich, under the motto "Millions Missing". On that occasion, attention will be drawn to the millions of sick people who are bedridden and have been unable to leave their houses and apartments for years.
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Translated with www.DeepL.com/Translator

Kalliope · May 8, 2019

Article about Gemma who is part of the Real ME, aiming "to bring an end to people suffering in silence this ME Awareness Week".

CambridgeshireLive: Cambridge woman reveals the truth about living with a debilitating illness

"ME remains a hidden disease. There is no known cure and no effective treatment and it can lead to greater functional impairment than multiple sclerosis or cancer.
“The most severe sufferers are often the most hidden.
“People find it hard to understand, with the medical advancements, how something like this can happen in this day and age.
“We desperately need more funding towards research and give people a fighting chance or reclaiming their health.”

NelliePledge · May 8, 2019

More MEAssociation local press coverage https://www.nottinghampost.com/news/nottingham-news/woman-says-feels-like-100-2829275 the same person was on local BBC TV and radio news.

Organised by John Siddle the MEAssociation press person.

I find it difficult to guage whether there is more press coverage than previous years due to being relatively new to ME. I’m getting that impression this year.

Cinders66 · May 8, 2019

NelliePledge said: ↑

More MEAssociation local press coverage https://www.nottinghampost.com/news/nottingham-news/woman-says-feels-like-100-2829275 the same person was on local BBC TV and radio news.

Organised by John Siddle the MEAssociation press person.

I find it difficult to guage whether there is more press coverage than previous years due to being relatively new to ME. I’m getting that impression this year.
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The Nottingham article is very good but I don’t agree at all with the MEA stance of keeping detached from and not encouraging direct action by their groaning members. They are, I’m told , going to put something on the wall about #MM today when some events have already happened.

ME Association chairman Neil Riley said: “To look at these people - men, women, children - and their individual tragedies only further serves to ask the question: 'Why is ME still not being investigated with the urgency it so obviously requires?

Answer: Partly because there’s not enough direct action and pressure being applied, patients aren’t being mobilised because MEA & AFME don’t want to Lobby or embarrass their collaborative friend the MRC to put up incentivise funding and god knows what AFME are achieving this month, useless. MRC funding since 2015 has been about or less than £1/year / patient, our charities raise on average 30 times less than comparable illness, we should be seeing a massive push on research funds and only one charity is doing it.

NelliePledge · May 8, 2019

I don’t know if the MRC thing is the motivation but I do think what’s missing from the MEAssociation material is a clear up front focus on what needs to happen. You have to get your message over in the headline first sentence and paragraph. Not the last sentence. Not many get that far when they skim through an online article.

at least a lot of MEAssociation stuff this year doesn’t have the it’s real it’s physical it’s me slogan I hope they drop that completely as it is an own goal. Real people real illness real me is the new slogan

ETA. I think most of MEAssociation examples I’ve seen so far are women under 40. How about you can have this illness for 40 or 50 years. Or you can get diagnosed when you’re in 50s. It affects everyone.

Andy · May 8, 2019

A DEMONSTRATION is set to take place in the city centre this month to highlight the plight of ME sufferers across the globe.

Southampton Guildhall Square will be one of 90 worldwide sites demonstrating from May 5 to 12 as part of the week-long campaign #MillionsMissing.

The campaign is calling on health officials and the government to end the inequality of funding and research into the debilitating illness.
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https://www.dailyecho.co.uk/news/17...some-to-southampton-to-highlight-me-problems/

Sly Saint · May 8, 2019

#MillionsMissing South Carolina: ME Awareness Day Press Conference

https://www.youtube.com/watch?v=1L1cxGpvVx0

article referred to
https://www.postandcourier.com/feat...cle_7d95a8c2-6c1b-11e9-9e17-6347b3ab9a1e.html

Andy · May 8, 2019

https://twitter.com/user/status/1125706418378682368

Andy · May 9, 2019

What is #MillionsMissing?
#MillionsMissing is a global campaign for patients with Myalgic Encephalomyelitis (ME) who are demanding health equality and funding for biomedical research that reflects the number of patients with ME around the world. In May, towns and cities around the world will participate by filling their local squares with shoes representing those with ME who are hidden from the world due to the debilitating and serious long-term effects of this illness.

This week, Southampton will hold its 2nd #MillionsMissing in the centre of the city. Organiser Claire Tripp, explains what to expect from the event “The public will learn more about how ME affects people’s lives day to day and reflect on what it means to have such a serious disabling condition. Whereas many may know it’s a debilitating illness, there’s little awareness of how every aspect of living that we all take for granted is limited when trying to live with ME.”
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https://www.healthwatchsouthampton.co.uk/news/what-is-millionsmissing/

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