Meine Insel, ein Gedicht während der Fibromyalgie-Therapie

Wir haben aktuell im Juni 2015 wieder eine Gruppentherapie in der Tagesklinik mit Fibromyalgiepatienten. Der Therapietag beginnt mit einer Gruppenvisite. Bei der ist auch eine Krankenschwester anwesend. Und die überraschte uns heute mit einem Gedicht, das sie für die Teilnehmer der Therapiegruppe geschrieben hatte.


Meine Insel

Da ist diese Insel an einem unbestimmten Ort
Von zu Hause jedoch ist sie meilenweit fort

Mitten auf der See, umgeben von Sonnenschein
Der kleine, gelbe Fleck im Blau muss Deine Insel sein

Ein langer, weiter Sandstrand, der warm zwischen den Zehen durchrinnt
Grüne Palmen und eine laue Brise, die den Salzgeruch mit sich bringt

Hier gibt es nur Dich und deine Belange
Dieser Ort kennt weder Angst noch Bang 

Hier ist es warm voller Geborgenheit und Liebe
Hier bist Du kein Knecht innerer Triebe

Du musst nichts beweisen, unterliegst keinem Zwang
Hier leistet man, was man wirklich auch kann

Das ist der Ort, an dem Du Kraft tankst und ruhst
Dir und deiner Seele einfach etwas Gutes tust

Nun ziehe los, die Insel zu finden
Dem anstrengenden Alltagschaos zu entschwinden

Und bist Du erst dort, kann Dir nichts mehr geschehen
Endlich wirst Du das Leben von der Sunnyside sehen

Wilder Zebrastreifen

Die Rheinische Post berichtet über einen wilden Zebrastreifen: http://www.rp-online.de/nrw/staedte/meerbusch/. Gestern war er aufgefallen. Jemand hatte in Meerbusch-Strümp mit weißer Farbe einen Zebrastreifen auf die Straße gemalt. Das Foto, eine Nachstellung des Fotos auf dem Album Abbey Road von den Beatles, ist sehenswert.

Und nun ermittelt die Polizei. Während schon der Regen die weiße Farbe abwäscht. Und die Besitzer von Luxuskarossen sorgen sich, dass die Farbe ihr Gefährt verschmutzen könnte.

Würde ich so denken, dann müsste ich auch die Kinder bzw. ihre Eltern verklagen, die mit Kreide auf den Bürgersteig malen, denn die haftet doch dann an meinen Rädern, äh Schuhen. Ist Strafanzeige wg. Sachbeschädigung nicht auch ziemlich über's Ziel hinausgeschossen?

An die Stelle Xantenerstraße / Helen-Keller-Straße gehört schon längst wenigstens ein Zebrastreifen, besser noch eine Ampelanlage. Schön, dass durch diese illegale Aktion Bewußtsein geschaffen wurde. 

Bild: http://bc01.rp-online.de/polopoly_fs/fussgaenger-ueberquerten-sonntag-unbekannten-angelegten-zebrastreifen-1.5185457.1434996464!httpImage/4290033205.jpg_gen/derivatives/d950x950/4290033205.jpg

30.06.2015
Es gibt Nachahmer, diesmal an der Ecke Bommershöfer Weg / Görresstraße in Osterath. Siehe hier: https://www.facebook.com/photo.php?fbid=386555258211852
Das sieht nach einer Aktion im Sinne von Che Guevara aus: "Schafft zwei, drei, viele Zebrastreifen". Aber Spaß beiseite, die Polizei muss dagegen vorgehen, denn die juristische Seite ist eindeutig. Man kann nicht selbsttätig Verkehrsschilder, Ampeln, Zebrastreifen anbringen. Auch die zivilrechtliche Seite könnte bei einem Unfall problematisch werden. Hat der Fußgänger auf einem wilden Zebrastreifen die gleichen Rechte, die er auf einem normalen Zebrastreifen hat? 

The Magic Eight Questions for Safety in Treatment with Biologics

While at the EULAR Annual Meeting 2015 in Rome I've been asked for my Magic Eight Questions. I've chosen these eight questions out of safety concerns. In real life you can't spend as much time as you would do under study conditions. But nevertheless we have to make sure; our patients are not at risk of unnoticed side effects.

The eight questions cover quite a lot of, but not every possible side effect. You have to add one or two open questions. I ask these questions at every visit and always keep to the same order. By and by the patients learn what I want to know and help with telling me, even before I start asking. And they learn to look for the symptoms of possible side effects.

1. Contact to someone with tuberculosis

Most patients answer the first time with: "How should I know?", or: "Not to my knowledge." I tell them, that they will know, as public health officials will contact them, if they had been in contact. Lately I had two patients: one working as an emergency assistant and another working as an interpreter.

2. Infections

I look for any hint of an infection, also if these are past. We talk about the therapies and sometimes I can educate, if things haven't run smoothly, like antibiotics without making sure that it's a bacterial infection. Or not stopping the biologic in a relatively severe infection.

3. Loss of Weight

Most people will answer that they gained weight. I've seen more patients under traditional DMARDs with wasting due to the drug. Wasting - that is what we should look for.

4. Night Sweats

There are some patients, who have night sweats now and then, or where I have to ask if they also sweat during daytime. Together with loss of weight you might get the alarm ringing for more diagnosis and postponing the biologic.

5. Neurological disorders

Some patients think I ask for depression or nervousness. The question is more to know if dysaesthesia and other neurological disorders are developing.

6. Diarrhoea

Quite people think going three times per day to the toilet is diarrhoea. So you should give a definition. And I like to quote Hippocrates, who though four times soft stool per day is normal; people obviously ate more fibre in these days.

7. Stomach Problems

I added this question (also No. 6) because of the side medications and tocilizumab. Some people take NSAIDs without PPIs, so you might have to add a PPI to the regular medication.

8. Loss of Hair

Not every loss of hair is due to medication! It is the unexpected loss of hair that I'm interested in. Some patients have to count how many hairs from the head they loose in 24 hours. You might say that isn't an issue with biologics, but think of all you patients, who take concomitantly methotrexate, leflunomide, and others.

The Magic Eight Questions won't solve all your problems, but make your life as a rheumatologist easier and help to identify safety issues with your patients.

Tweetup at EULAR Annual Meeting 2015 in Rome

Also this year we had a tweetup at the EULAR Annual Meeting on Thursday 12:00 hr. The EULAR Press Office had given us a room (Hall 6 – Puccini Room) to meet. I’d like to thank Mrs Emma Reynolds from the Eular Press Office, who made this possible. This time we’ve been only a small number, but we had an hour of interesting discussion and took some lunch at the same time.

Here’s a picture or the people at the Tweetup:

C Gytz Ammitzbøll @cgytz

Lily Rheum ‏@L_tweet

Dr Irwin Lim @_connectedcare

Dr Ai Lyn Tan ‏@DrAiLynTan 

Lothar M. Kirsch 祁建德 @Rheumatologe

Copyright

We talked about copyright. It seems to be hindering discussions. Lots of poster presenters used the green symbol to allow pictures, which has been a step into the right direction. 
But during the sessions taking pictures was prohibited and enforced. The EULAR Press Office commented on this: "... enforcing the ‘no picture taking or recording’ rule is to protect the copyright of the data being presented at the congress because the copyright does not belong to EULAR but to the author. EULAR doesn’t have the authority to allow the recording of content and our only objective in upholding the rule is to protect the copyright of the data being presented at the congress." It is understandable that a no exception rule is easier to maintain, especially at a conference of such a proportion.
I’ll comment in another blog post on this later as there might be other forms of protecting the author's rights and encourage discussion of what he/she presented. 

EULAR and social media

The EULAR Press Office is twittering and was and is very active before, during an after the meeting.

But EULAR somehow hasn’t noticed that social is a challenge and could be used to promote the goal Prof. Cutulo had outlined in the visions of EULAR in his opening speech.

The ACR is much more into social media.

We’ve seen that on pharmaceutical firm had a board showing twitterers (all known to us personally or at least from the exchange on twitter). But let’s not leave twitter and social media in the hands of the pharmaceutical industry.

I’ll also take this up again later in a blog post.

How long it takes to become a rheumatologist

We compared the differences around the world on how to become a rheumatologist.

Over hours

I guess it doesn’t surprise anyone, that worldwide medicine and care in rheumatology depends on over hours.

To sum it up

Thanks everyone for participating. I hope to see you gain. Maybe we should meet at the next EULAR with a (short) agenda on what we want to accomplish on twitter as rheumatologists.

List ot twitterers around the EULAR tweetups

@alhkim

@ArthritisRes

@besada_emilio

@carvicab

@cgytz

‏@CreakyJoints

@Docrhumato

@doctorakerkar

@DrAiLynTan

@JoseCamposMD

‏@L_tweet

@Philipcrobinson

@PhilipGardiner

‏@matylda68

@NatRevRheumatol

@rajsengupta

@Rheumatologe

@Rheuma_suffolk

@rheumi_

@RonanTKavanagh

@synovialjoints

@zandbelt

@_connectedcare

Logistics at the EULAR 2015 Meeting in Rome

As I had attended the EULAR 2010 Meeting in Rome, I should have expected some problems this year, too. Maybe I blanked out out the logistic shortcomings. But let me already make it clear at this point, I don't think that the fault lies at EULAR.

I was staying at a small hotel in Fiumicino. Airport and the Fiera di Roma Congress Center are reasonable close by. The hotel was about 100 m away from the riviera. Molto bene! If it didn't turn out to a logistic nightmare. The sleepy, little town isn't well connected by public transport; maybe that's the reason I liked Fiumicino, not overcrowded by tourists. If I I took a late  start to go to the meeting I used a shuttle service. I only did this once. Otherwise I took the shuttle to the airport, the train from there and then another shuttle bus. The railway station is about 1.5 km from the congress center; if you missed the shuttle, you had to walk. If you didn't have a ticket, you found out that there is no vending machine at the station.

To add to my personal logistic nightmare, my airline had changed my departure from Fiumicino to Ciampino airport, only 24 hours before the start. To go from Fiumicino to Ciampino is a logistic challenge, if you do it the way I did, as the people I asked didn't know that there is a shuttle bus in between the airports.

Lets come back to transportation. There have been improvements to 2010, but still the shuttles were not frequent enough. And the stuttles to and from the airport were very insufficient. Even if I would have left from Fiumicino, I wouldn't have made it with the shuttle.

The toilet facilities were underdimensioned, which meant long lines after the sessions; the women's waiting line had been discouraging. Some doors didn't close. The sanitary conditions were bad, not always, but at peak times.

I found the logistics of catering very good, even for vegetarians!

Sessions were well advertized and it was easy to find the locations.

Would I come back to Rome, if in let's say five years the EULAR Annual Meeting would be there again? By all means yes!

EULAR Annual Meeting 2015 in Rome Opening Session

The Opening Session for the Annual Meeting of EULAR has already a history and is quite predictable, but this time we were greeted in Latin. So Prof. Cutolo, the current president of EULAR, started in an unusual way: „Salvete, medici totius Europae totiusque orbis terrarum!“ (Welcome doctors from Europe and all the world!)

The short history of EULAR and what it is today showed some new insights. EULAR spans across 47 nations and keeps contacts with other organizations like ACR, PANLAR, ILAR, APLAR, WHO, EMA etc., as well as patients' organizations.

EULAR has a vision for:

-        Research (EULAR will be the central platform for basic and clinical in rheumatology)

-        Education (EULAR will offer high level education for physicians, health professionals, and the people with the diseases)

-        Meeting (EULAR will broaden the reach of the meeting)

-        Advocacy (EULAR will have significant influence on EU level, assist actions on national levels towards improving research funding, social policy legislation, quality of care)

-        Standards of care (EULAR recommendations and criteria for rheumatic diseases)

-        Profile (EULAR will raise its profile to be more visible to patients and health care providers)

-        National Relations (EULAR will engage even more in national societies).

High set, but reachable goals.

Prof. Cutolo looked first at the numbers of abstracts – in 2000 (Nice) 850 abstracts and now over 4300. He then looked at the quality of the abstracts and found out that the quality was improving, too.

The cultural program has been predictable – Italian opera. How come, I was thinking of „Friends of the Italian Opera“ (Some like it hot – by Billy Wilder)? Nevertheless the program was well received and the selection had been standards that most people would know. Really enjoyable.

And there had been space for awards. One award (Abstract Basic Science) was going to a twitter friend: Philip Robinson (@philipcrobinson) from Australia. Congratultions!

The rest of the evening was dedicated to a social gathering in the EULAR garden. I talked with some German rheumatologists, whom I don't see regularly.

FreitagsGedichte / Kurze Gedichte 05.06.2015

Spiegel

    die Spiegel

Sind

Stumpf

Die

GeFährten

GeAltert

Nur das

Leben

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Zäh

Früchte

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Sondern

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VerFaulen

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Dir

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Wird

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Wer Hinten

Steht

Kann

Noch

    Nach

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VerGessen

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Hast Du

VerGessen

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Grab

Zu be-

Suchen

IrgendWann

    Findest Du

Es schon

GeFunden

    nach langem

Suchen

Hast

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    laßt uns

Die Grab-

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In die

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Sie wieder

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Weitere #KurzLyrik / Kurze Gedichte:

http://rheumatologe.blogspot.de/2015/05/freitagsgedichte-kurze-gedichte-29052015.html

http://rheumatologe.blogspot.de/2015/05/freitagsgedichte-kurzlyrik-15052015.html (mit weiteren Links)

http://rheumatologe.blogspot.de/2015/01/freitagsgedichte-kurzlyrik-30012015.html (mit weiteren Links)

.

.

 

Fibromyalgia and Physical Fitness

There's another study concentrating on physical fitness in fibromyalgia patients. It's called the al-Ándalus project.

A. Soriano-Maldonado and colleagues published a population-based cross-sectional study. The study has been well powered (N=468) to reach a meaningful statistical analysis and hence conclusions. Tests included algometry, FIQ, parts of the SF-36, tools for pain-related catastrophizing and chronic pain self-efficacy, the Senior Fitness Test battery, computed scores for aerobic fitness, muscle strength, flexibility and motor agility etc. Results showed: "higher physical fitness was consistently associated with lower levels of pain, lower pain-related catastrophizing, and higher chronic pain self-efficacy".

Conclusions: "Our results suggest that higher physical fitness is associated with lower levels of pain, lower pain-related catastrophizing, and higher chronic pain self-efficacy in women with FM. These results might have implications for future intervention studies in this population."

Another study that shows people with fibromyalgia feel better if they posses a high level of physical fitness. What the study doesn't suggest is addressing physical fitness and goodbye fibromyalgia. It shows that we have to screen better for physical fitness in fibromyalgia patients. Maybe less physical fitness doesn't only mean more catastrophizing and less self-efficacy but also more depressive symptoms.

And there is hope as other studies show that physical therapy and behavioral therapy can be combined to treat more effectively fibromyalgia.

Link:

http://www.ncbi.nlm.nih.gov/pubmed/25939406

Zustellung eines Koffers

Die Kusine meines Vaters kam aus Berlin nach Köln, um dann weiter nach Ungarn zu reisen. Da hatte sie rechtzeitig den Koffer mit der Post nach Köln geschickt. 
Irgendwie klappte es nicht. Sie erhielt die Auskunft, dass der Koffer noch nicht in Köln wäre. Und das stimmte. Am Vormittag des Ankunftstages sagte man ihr, dass der Koffer wieder auf dem Rückweg nach Berlin wäre, da die Anschrift nicht zu entziffern wäre. Hmh!

Also, da brauche ich gar nicht von meiner eigenen Sauklaue auszugehen, um sagen zu können, dass dies 1A super deutlich leserlich geschrieben ist. 
Aber der Koffer war nicht auf dem Weg nach Berlin, sondern wurde drei Stunden vor dem Eintreffen der Kusine abgeliefert.
Was mag da schief gegangen sein? Ich muss zugeben, manche Dinge weiß auch ich nicht.

Ich hoffe, dass es sich um einen Einzelfall handelt, denn meine Eltern waren bislang zufrieden mit diesem Service.