OMF needs your help! (Translators)

[Ben H]

Hi guys,

OMF needs your help!


Dear OMF Friends,


Open Medicine Foundation (OMF) is looking for volunteers to be a part of their “International Translators Team”. As OMF is international, it is sometimes challenging for patients to read our information in English. Patients around the world appreciate our hopeful messages in their local language.

Our International Liaison Sara has gathered an amazing team of translators. We are grateful to the expedient work of this incredible team. The Team currently translates OMF’s information in 12 languages and we share it with the different language communities around the world.


We are currently looking for additional volunteers who can translate from English to French, German, Japanese, and Norwegian. We have several volunteers for each language, so people can share the workload.

The workload is not extensive, there are no real deadlines, and we are very respectful towards health limitations and bad days.

If you are able to volunteer, or know someone who might be interested, and want to be part of an amazing and growing International Team OMF, please contact our International Liaison, Sara Piccer at OMF: sara@omf.ngo.

All further ideas and input are welcome. We hope to be able to welcome you soon to our Team OMF Family


Thanks guys,


B

 

[FMMM1]

Hi guys,

OMF needs your help!


Dear OMF Friends,


Open Medicine Foundation (OMF) is looking for volunteers to be a part of their “International Translators Team”. As OMF is international, it is sometimes challenging for patients to read our information in English. Patients around the world appreciate our hopeful messages in their local language.

Our International Liaison Sara has gathered an amazing team of translators. We are grateful to the expedient work of this incredible team. The Team currently translates OMF’s information in 12 languages and we share it with the different language communities around the world.


We are currently looking for additional volunteers who can translate from English to French, German, Japanese, and Norwegian. We have several volunteers for each language, so people can share the workload.

The workload is not extensive, there are no real deadlines, and we are very respectful towards health limitations and bad days.

If you are able to volunteer, or know someone who might be interested, and want to be part of an amazing and growing International Team OMF, please contact our International Liaison, Sara Piccer at OMF: sara@omf.ngo.

All further ideas and input are welcome. We hope to be able to welcome you soon to our Team OMF Family


Thanks guys,


B

Hi Ben. Mary (moderator) is starting a new thread on funding for ME/CFS research [https://forums.phoenixrising.me/ind...e-cfs-research-theyre-working-for-you.61516/].

I noticed single-cell Raman micro-spectroscopy has appeared as a potential diagnostic test [https://pubs.rsc.org/en/content/articlelanding/2018/an/c8an01437j/unauth#!divAbstract]. Has OMF/Ron looked at this technique? Researchers in Oxford University, and Newcastle University, carried out this study.

The European Union (EU) funded the development of a diagnostic test for Lyme disease [2 million euros - Horizon 2020]. It might be worth getting folks in all of the EU countries to ask their Member of the European Parliament to ask the EU Commission to support the development of a diagnostic test for ME/CFS [Horizon 2020]. Possibly your translators could assist in this i.e. particularly if they live in an EU country.

 

[S-VV]

Hello Ben. If you are ever in need of a Spanish translator, I would be glad to help

 

[FMMM1]

Hello Ben. If you are ever in need of a Spanish translator, I would be glad to help

Hi, I asked the European Union (EU) Committee on the Environment, Public Health and Food Safety [ENVI Committee] to lobby for funding for ME/CFS [see extract from email below*]. The ENVI Committee are currently lobbying for increased funding for research into Lyme disease and the development of a diagnostic test for Lyme disease. The EU has e.g. funded the development of a diagnostic test for Lyme disease [2 million euros/dollars] +++ research; the EU has not funded any research into ME/CFS.

Here are some Spanish Members of the European Parliament who appear to have an interest in diseases which are similar to ME/CFS:
Beatriz Becerra Basterrechea (ALDE) - Spain - fibromyalgia
José Blanco López (S&D) - Spain - fibromyalgia
Rosa Estaràs Ferragut (PPE) - Spain - fibromyalgia
Pilar Ayuso - Spanish (ENVI Committee) - Declaration of the European Parliament on fibromyalgia

Would you be prepared to translate this request for funding for ME/CFS into Spanish? I.e. so that we/I/you can email these MEPs directly?


*Extract from email to ENVI Committee:
"Hello,
I noticed that the Committee on the Environment, Public Health and Food Safety [ENVI Committee] requested an increase in funding for research focused on methods for diagnosing Lyme disease etc. [Parliamentary question O-000088/2018].

There are approximately I million people in the European Union who have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome [ME/CFS]. Approximately 80% are women. Current there are no biological diagnostic tests for ME/CFS and many of those with the disease feel that they are unfairly labelled as having a psychological condition, rather than a biological disease. There is currently also a risk that people with ME/CFS will receive inappropriate treatment e.g. harmful drugs because their diagnosis is incorrect. In many ways the situation with ME/CFS is similar to Lyme disease.

Recently scientists in Oxford and Newcastle Universities showed that "phenylalanine can be used as a potential biomarker for the diagnosis of CFS" [https://pubs.rsc.org/en/content/articlelanding/2018/an/c8an01437j#!divAbstract]. I.e. a blood based diagnostic test for ME/CFS. These scientists are currently carrying out a larger study.

Request:
I would be grateful if you would ask a Parliamentary Question or lobby in some other way for ME/CFS. I.e. ask the European Commission to review existing biological methods, which separate people with ME/CFS from healthy people, to see if they could be used as a diagnostic test for ME/CFS. E.g. scientists in Oxford and Newcastle Universities recently showed that "phenylalanine can be used as a potential biomarker for the diagnosis of CFS"."

I've been posting regarding funding here: https://forums.phoenixrising.me/ind...ch-theyre-working-for-you.61516/#post-1001161

 

[S-VV]

Yeah, of course I can translate the text for you. Just attach a file with the whole email

 

[FMMM1]

Yeah, of course I can translate the text for you. Just attach a file with the whole email

First of all thank you very much. Secondly I'm slightly surprised by your reply i.e. I don't have a file to attach; just the text at the bottom of my previous post and possibly a personalised introductory bit i.e. "[name of MEP + email address] --- -- I noticed that you have an interest in ---fibro/Lyme/---". However, if I'm missing something fundamental then feel free to point it out; it wouldn't be entirely unexpected i.e. that I would miss something.

Regards and thanks again.

 

[FMMM1]

The European Parliamentary question [E-007859-15] on Fibromyalgia which Beatriz Becerra Basterrechea (ALDE) asked is set out below*. I've drafted an introduction and a request (below); grateful if you could translate this so that I/we can send it to Beatriz. Thank you again for your assistance and happy to discuss. @S-VV

Start translation:
"Beatriz, I noticed the European Parliamentary question on Fibromyalgia which you asked [E-007859-15]. The position in relation to ME/CFS is very similar to fibromyalgia - many of those with ME/CFS suffer social exclusion. The following is taken from a Institute of Medicine Report on ME/CFS:
"SUMMARY
ME/CFS clearly impairs patients' ability to function on a regular basis both cognitively and physically. This impairment often confines patients to their homes or beds and may severely restrict their ability to attend to their jobs or schoolwork, among other responsibilities and basic needs. Recovery is a highly variable and generally lengthy process with no standard course of treatment, and some patients' symptoms may persist indefinitely." [https://www.ncbi.nlm.nih.gov/books/NBK284900/]

It is estimated that 1 million people in EU have ME/CFS. Approximately 80% of those with ME/CFS are women - ME/CFS is considered to be a gender-specific illness.

Current there are no biological diagnostic tests for ME/CFS and many of those with the disease feel that they are unfairly labelled as having a psychological condition, rather than a biological disease. There is currently also a risk that people with ME/CFS will receive inappropriate treatment e.g. harmful drugs because their diagnosis is incorrect.

Recently scientists in Oxford and Newcastle Universities showed that "phenylalanine can be used as a potential biomarker for the diagnosis of CFS" [https://pubs.rsc.org/en/content/articlelanding/2018/an/c8an01437j#!divAbstract]. I.e. a blood based diagnostic test for ME/CFS. These scientists are currently carrying out a larger study.

Request:
I would be grateful if you would ask a Parliamentary Question or lobby in some other way for ME/CFS. I.e. ask the European Commission to review existing biological methods, which separate people with ME/CFS from healthy people, to see if they could be used as a diagnostic test for ME/CFS. E.g. scientists in Oxford and Newcastle Universities recently showed that "phenylalanine can be used as a potential biomarker for the diagnosis of CFS"." End translation.






*European Parliamentary question [E-007859-15]:
"Subject: Social exclusion of fibromyalgia sufferers
Answer in writing
Seven years on from the publication of Written Declaration No 0069/2008, fibromyalgia sufferers remain subject to worrying levels of social exclusion, discrimination and inequality, as demonstrated by the European study carried out by the Boston Scientific Corporation, which states, for example, that 19% of those affected were out of work as a direct result of the condition.
Fibromyalgia is considered to be a gender-specific illness — 90% of sufferers are women — but it has not been recognised as a disabling disease that prevents people from leading a dignified working life.
In view of the inequality and discrimination that fibromyalgia sufferers face, and given the Union’s duty to combat social exclusion and discrimination (TEU, Directive 2000/78/EC), could the Commission answer the following:
1. Is it planning to take action to combat the discrimination and social exclusion that fibromyalgia sufferers face, with a particular focus on women?

2. Does it intend to renew the European Musculoskeletal Conditions Surveillance and Information Network, with a particular focus on fibromyalgia, and to adopt similar initiatives?

3. Does it think it would be worthwhile to commission a detailed study from the European Office of Statistics in order to ascertain the impact of this illness and the profile of sufferers in the EU?"

 

[FMMM1]

The European Parliamentary question [E-010730-15] on Fibromyalgia which Rosa Estaràs Ferragut (PPE) asked is set out below*. I can draft an introduction to this question and get back to you about the translation. @S-VV


*Subject: A European diagnosis for fibromyalgia
Answer in writing
Fibromyalgia is a painful condition that affects 14 million people across Europe, 90% of whom are women. Women often find themselves at a disadvantage where jobs are concerned, and things go from bad to worse if they suffer from a condition like fibromyalgia.
Fibromyalgia is an illness that prevents sufferers, whether they are women or men, from doing a normal day’s work. According to the European Network of Fibromyalgia Associations, ‘it has a devastating impact’ on carers and family members.
There is no clear diagnosis at European level, and only some experts classify it as an illness, which makes it even more difficult to treat effectively. Parliament has, however, signalled its clear support by means of a number of written declarations calling for improved diagnosis, awareness-raising, data gathering and the establishment of EU strategies.
1. Given that 90% of fibromyalgia sufferers are undiagnosed in many Member States, which leads to discrimination and exclusion, does the Commission take the view that there is a need to establish, at EU level, a diagnosis that can be applied by all the Member States?
2. Is the Commission planning to take steps to protect sufferers so that they do not lose their jobs as a result of fibromyalgia?

 

[S-VV]

Hello! About the attached file, it was because I thought there may be more text to translate.

I'm a bit busy for the next few days, but as soon as I find some time (and energy!) I'll post the translation

 

[FMMM1]

Hello! About the attached file, it was because I thought there may be more text to translate.

I'm a bit busy for the next few days, but as soon as I find some time (and energy!) I'll post the translation

Thank you very much. I'm hoping that this may encourage other readers/bloggers to contact their elected representatives i.e. requesting public funding for research and the development of a diagnostic test for ME/CFS.