Sleep, fleshly birth, in peaceful earth And let thine ears list to the music of the spheres While we around this fairy ground Thy doleful obit keeping Make marble melt with weeping With num’rous feet we’ll part and meet Then chorus-like in a ring thy praises sing While show’rs of flow’rs bestrew thee We’ll thus with tears bedew thee Rest in soft peace, sweet youth, and there remain ’till soul and body meet to join again
Robert Ramsey
Draw on, sweet Night, best friend unto those cares That do arise from painful melancholy; My life so ill through want of comfort fares, That unto thee I consecrate it wholly.
Sweet Night, draw on; my griefs, when they be told To shades and darkness, find some ease from paining; And while thou all in silence dost enfold, I then shall have best time for my complaining.
Whilst the words of Robert Ramsey reflect a little of the hope that we have in the resurrection of the dead at the glorious return of the Lord Jesus Christ, they seem to contain more of the idyllic and vain hope of the Greek, and without the final line the bleak, lost hopelessness of the contemporary humanist, so contrary to the teaching of our Lord.
On the other hand the words of John Wilbye speak much more clearly of the pain of this present world, reflecting more of the complaint of Job in his distress1, which rested upon his hope in the resurrection of the dead when he would see his Saviour face to face2 and in which he reminded us of the judgement that shall face all of us on that great and tremendous day. Job also stands as a picture to us of the righteous man3 who suffered4, prefiguring the crucifixion of our Lord Jesus Christ, the innocent one who died for the guilty.
Wilbye has been taken from COLLECTION MUSICALE EN FORMAT NUMÉRIQUE Polyphonies vocales de la Renaissance notated by Coco in Noteworthy and.corrected as appeared to Coco to be necessary.
After this Job opened his mouth and cursed the day of his birth. And Job spoke, and said:
‘May the day perish on which I was born, and the night in which it was said, “A male child is conceived.” May that day be darkness; may God above not seek it, nor the light shine upon it. May darkness and the shadow of death claim it; may a cloud settle on it; may the blackness of the day terrify it. As for that night, may darkness seize it; may it not rejoice among the days of the year, may it not come into the number of the months. Oh, may that night be barren! May no joyful shout come into it! May those curse it who curse the day, those who are ready to arouse Leviathan. May the stars of its morning be dark; may it look for light, but have none, and not see the dawning of the day; because it did not shut up the doors of my mother’s womb, nor hide sorrow from my eyes.
Why did I not die at birth? Why did I not perish when I came from the womb? Why did the knees receive me? Or why the breasts, that I should nurse? For now I would have lain still and been quiet, I would have been asleep; then I would have been at rest with kings and counselors of the earth, who built ruins for themselves, or with princes who had gold, who filled their houses with silver; or why was I not hidden like a stillborn child, like infants who never saw light? There the wicked cease from troubling, and there the weary are at rest. There the prisoners rest together; they do not hear the voice of the oppressor. The small and great are there, and the servant is free from his master. Why is light given to him who is in misery, and life to the bitter of soul, who long for death, but it does not come, and search for it more than hidden treasures; who rejoice exceedingly, and are glad when they can find the grave? Why is light given to a man whose way is hidden, and whom God has hedged in? For my sighing comes before I eat, and my groanings pour out like water. For the thing I greatly feared has come upon me, and what I dreaded has happened to me. I am not at ease, nor am I quiet; I have no rest, for trouble comes.‘ Job 3 ↩︎
My bone clings to my skin and to my flesh, and I have escaped by the skin of my teeth. Have pity on me, have pity on me, O you my friends, for the hand of God has struck me! Why do you persecute me as God does, and are not satisfied with my flesh? Oh, that my words were written! Oh, that they were inscribed in a book! That they were engraved on a rock with an iron pen and lead, forever!
For I know that my Redeemer lives, and He shall stand at last on the earth; and after my skin is destroyed, this I know, that in my flesh I shall see God, whom I shall see for myself, and my eyes shall behold, and not another.
How my heart yearns within me! If you should say, “How shall we persecute him?”— since the root of the matter is found in me, be afraid of the sword for yourselves; for wrath brings the punishment of the sword, that you may know there is a judgment. Job 19:20-29 ↩︎
There was a man in the land of Uz, whose name was Job; and that man was blameless and upright, and one who feared God and shunned evil. Job 1:1 ↩︎
Then the Lord said to Satan, ‘Have you considered my servant Job, that there is none like him on the earth, a blameless and upright man, one who fears God and shuns evil? And still he holds fast to his integrity, although you incited me against him, to destroy him without cause.’ Job 2:3 ↩︎
Why is Coco posting this here? Is it because Coco wants to boast about what Coco is doing, or about to do? No! Is it because Coco wants to appeal for funds? No!
The International Lymphoedema Framework (ILF) exists to create ‘a better everyday life for people living with lymphœdema and related disorders’. In Uganda and other low resource countries good treatment is hard to come by, and expensive. The ILF, working with the Ugandan Lymphoedema Framework and a patient association. the Lymphoedema Warriors, are supporting a training camp at Lira, Uganda. Four or five lymphœdema specialists from Europe are going out to work with a specialist nurse at this camp to teach self-management and self-care. You may read much more below from the CEO of the ILF. The European team will be covering their own costs. All donations will be used to meet the necessary costs of the camp and to provide treatment for those living with lymphœdema.
What do the team face? The picture of a legs in the article below are of two of the least offensive insights that Coco can offer you.
This work is much more than helping those who come to the camp. It is part of ongoing epidemiological (Coco hopes he can spell) work, which will help to direct medical and government resources into those places of need and greatest effectiveness. The work will be documented and there shall be follow up.
Help Restore Hope, Dignity and Mobility
Support the Lira Lymphoedema Care Camp | 11–14 November 2026 | Lira, Uganda
Imagine waking up every morning with a leg so swollen that walking, working, caring for your family or even finding shoes becomes a daily struggle. Imagine living with pain, being stared at, and worrying that you cannot afford the care you need. For people living with severe lymphoedema, these challenges can be part of everyday life.
But this November, we have an opportunity to offer something powerful: practical care, compassionate support and renewed hope.
From 11 to 14 November 2026, the International Lymphoedema Framework (ILF), together with specialist volunteers and industry partners, plans to hold a dedicated lymphoedema camp in Lira, Uganda. We are asking you to help make this care possible for people who face enormous barriers to accessing it.
Severe swelling can profoundly affect mobility, independence and everyday life.
Why this camp matters
Lymphoedema, including lymphoedema associated with lymphatic filariasis, is more than swelling. Without appropriate support, it can affect a person’s ability to earn an income, participate in community life and care for themselves. The cost of seeking treatment can deepen poverty, while stigma, fear and misinformation may leave people isolated and without help.
Too often, the people who need care most are the least able to pay for it. No one should be left to face these challenges alone.
What your donation will help us do
Provide practical lymphoedema care and compression support. Camp participants will receive guidance on appropriate compression interventions, alongside baseline and follow-up quality-of-life assessments to help understand their experiences and the effects of care.
Teach skills that last beyond the camp. Participants will learn essential self-care techniques, including gentle washing, thorough drying, skin protection and appropriate compression. These skills can help them manage their condition long after the camp ends.
Offer counselling and human connection. People living with lymphoedema will have opportunities to share experiences, receive counselling and know they are not alone. Restoring confidence and dignity matters as much as addressing physical symptoms.
Replace fear and misinformation with knowledge. Clear, respectful education will address misconceptions about lymphoedema and lymphatic filariasis, explain the importance of early care and encourage people to seek appropriate services.
Strengthen specialist assessment and care planning. Dr Narahari of the Institute of Applied Dermatology is expected to contribute specialist clinical opinions to support more accurate assessment and appropriate management.
For people with advanced swelling, access to informed, compassionate care can make a meaningful difference.
Your gift is more than a donation
Your contribution can help bring together the specialist support, educational activities and care resources needed for this four-day camp. It is an investment in a person’s ability to care for their health, reclaim confidence and participate more fully in family and community life.
We cannot promise that four days will reverse years of swelling. What we can promise is a determined effort to provide evidence-informed support, listen to participants and equip them with knowledge and practical approaches for ongoing care.
Please stand with the people of Lira
Whether your gift is large or small, it can help turn compassion into action. Please donate to the Lira Lymphoedema Care Camp and share this appeal with friends, colleagues and anyone who believes that access to dignified healthcare should not depend on income.
Together, we can help replace isolation with connection, uncertainty with knowledge, and despair with hope.
DONATE TODAY. SHARE THIS CAMPAIGN. HELP RESTORE DIGNITY.
Campaign note: Images are shared to illustrate the lived impact of severe limb swelling. Informed consent was sought from participants for public fundraising use before publishing.
Coco had no idea in 1966 that not many years later Merthyr, living up to its name, would become another place of pilgrimage. We contrast the words of two men in their response to a modern tower of Siloam.
At 22:56
we hear about twenty seconds of Cardiff boy Dr Martyn Lloyd-Jones speaking words which, whilst strongly contrasting with those of the head teacher’s son, contain the same compassion for those who endured the suffering and those who did not survive it.
As the 60th anniversary of the Aberfan Disaster approaches, Jonathan Thomas hears powerful first-hand memories from two people whose lives were shaped by that tragic day.
Retired Methodist minister Rev Irving Penberthy recalls ministering to families in the immediate aftermath of the disaster, while Gareth Davies, who was just five years old and a pupil at Pantglas School, reflects on his experiences as a survivor. Together they explore how faith, community and resilience helped Aberfan endure its darkest days, and what those memories mean six decades on. Featuring reflections inspired by the exhibition Aberfan 60: The Days After, this programme offers a moving and thoughtful look at suffering and faith.
As for Siloam, the Lord taught us with compassion how we should respond:
There were present at that season some who told him about the Galileans whose blood Pilate had mingled with their sacrifices. And Jesus answered and said to them, “Do you suppose that these Galileans were worse sinners than all other Galileans, because they suffered such things? I tell you, no; but unless you repent you will all likewise perish. Or those eighteen on whom the tower in Siloam fell and killed them, do you think that they were worse sinners than all other men who dwelt in Jerusalem? I tell you, no; but unless you repent you will all likewise perish.”
If you have followed the news from Turkey you would think that the world is about to be overturned by the discovery of the millennium. Sometimes however it is worth knowing a little about what is said in the Talmud. – chabad.org
The answer appears to be similar to the answers to the questions:
What happened to the stones missing from Stonehenge?
What happened to the rest of Richmond Castle?
What happened to Cæsars’ marble from the Palatinate?
What happened to the covering of the Great Pyramid?
To many the answers are obvious, but no-one seems to want to accept the same answer to the question
What happened to Noah’s ark?
Five thousand years is a long time. Richmond Castle had had less than one thousand. The Palatinate has had less than two thousand years. Their former glories can be imagined, but they are no longer there to see. In the days of the disappearance of their glory there was no National Trust or English Heritage to protect and preserve the stones, much less the wood of the ark.
The Talmud records for us that there was theft of the material of the ark two and a half thousand years ago; how much was left in those days? Such thefts having been taking place since the flood had ebbed away, though Coco supposes that it was only the rich and powerful who would be the perpetrators, beams of fifty cubits being held, he supposes, to have quite high a high commercial value, hence it was only by filial relationship and high political profile that Haman could obtain one. There was not one in the nearby woodyard that had fallen off the back of a lorry.
Even if anything of the ark is left, which is found in the right location and can be positively identified with the ark – an insurmountable challenge Coco considers – it would not make one iota or even a lemma of difference to the faith of the believer, nor would it change the mind of the unbeliever who considers that all things have continued as they are from the beginning scoffing at the idea of judgement and of a world-wide flood1, which point to the return of the Lord Jesus Christ to judge the world.
We do not need the discovery of an ark to follow Jesus2. We have four3 witnesses who agree to his life and work – the law required two or three. He calls us to believe in him. 4
Beloved, I now write to you this second epistle (in both of which I stir up your pure minds by way of reminder), that you may be mindful of the words which were spoken before by the holy prophets, and of the commandment of us, the apostles of the Lord and Saviour, knowing this first: that scoffers will come in the last days, walking according to their own lusts, and saying, “Where is the promise of his coming? For since the fathers fell asleep, all things continue as they were from the beginning of creation.” For this they wilfully forget: that by the word of God the heavens were of old, and the earth standing out of water and in the water, by which the world that then existed perished, being flooded with water. But the heavens and the earth which are now preserved by the same word, are reserved for fire until the day of judgment and perdition of ungodly men. But, beloved, do not forget this one thing, that with the Lord one day is as a thousand years, and a thousand years as one day. The Lord is not slack concerning his promise, as some count slackness, but is longsuffering toward us, not willing that any should perish but that all should come to repentance2 Peter 3↩︎
Abraham said to him, ‘They have Moses and the prophets; let them hear them.’ 30 And he said, ‘No, father Abraham; but if one goes to them from the dead, they will repent.’ 31 But he said to him, ‘If they do not hear Moses and the prophets, neither will they be persuaded though one rise from the dead.’ Luke 16:19ff (here 29ff)↩︎
Matthew, Mark, Luke and John. They are eye-witness or records of eye-witness accounts of the life of the Lord Jesus. They agree in their testimony to Jesus’s life and works.↩︎
At that time Jesus answered and said, “I thank you, Father, Lord of heaven and earth, that you have hidden these things from the wise and prudent and have revealed them to babes. Even so, Father, for so it seemed good in your sight. All things have been delivered to me by my Father, and no one knows the Son except the Father, nor does anyone know the Father except the Son, and the one to whom the Son wills to reveal him.Come to me, all you who labour and are heavy laden, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls, for my yoke is easy and my burden is light. Matthew 11. ↩︎
When a private difference is made public by one party, one wonders just what is going on. Coco heard about this one and came up with his own response, which follows below. In some ways it seemed to him that the public remarks were either attention seeking, or simply a stirring up of trouble for a colleague, with whom there had been a cordial relationship for at least the nine previous years. What had gone wrong?
Well, the answer lies not in the article itself, but in something two steps removed. The protagonist, to whom Coco replies, had written together with some others to the defendant, who had replied in a similar congenial vein. That may be understood from the text of the public article. Neither of these two letters are in the public domain, though Coco has had sight of one of them.
This article then falls into presently two parts, Coco’s response and the public article. Should the earlier documents become public, they will be added here in due course to complete the picture, but if Coco forgets to do so, please remind him. So take a deep breath, and remember to breath as you read.
The response
Is the patient really at the centre?
Resilia is a patient organisation in Italy. Whilst the writer has only recently heard of them, he understands that their reputation is of a high standing in Italy. Their website indicates the breadth of the work that they do with patients who live with lymphœdema in Italy.
We read there: Linfa per la vita. It does not translate well into English. AI tools have some way to go, in the face of all the hype about them, before they equal the quality of imagination of the human brain. Whilst the translation is in part helpful, anyone with the beginnings of an understanding of lymphœdema will recognise the difference, and some overlap, in function of lymph fluids and the sap of a plant.
It is L’associazione per le persone affette da Linfedema. Whilst there are three, at least, other similar organisations in Italy, that they are the association, not merely an association, indicates the strength of their applaudable ambition to be able to deliver to patients all that they need to improve their quality of life whilst living with lymphœdema. As it says on its web-site it è un’associazione impegnata al fianco delle persone affette da linfedema, delle loro famiglie e di tutti coloro che operano nella prevenzione, nella diagnosi e nel trattamento di questa patologia. This translates well into English on its web-site – https://www.associazioneresilia.it/chi-siamo/
The International Lymphoedema Framework (ILF) shares the vision of Resilia for patients. Established independently in 2009, but operating since 2002, it has become the leading scientific organisation for the promotion of health care and understanding in the world of lymphœdema. The motto underlying the work of ILF expresses this as Creating a better everyday life for people living with lymphoedema and related disorders. This object is further expanded in the fundamentals of the ILF, in its goals and beliefs – see https://www.lympho.org/about in the ILF web-site. One of the fundamentals of ILF is that Patients should always be at the heart of the Framework Projects and it is here that the article referenced commences.
You will find a copy of the article in Italian and English below at Appendix I.
At a first reading the article may appear to be a sharp criticism of the conference planned in partnership with the Italian Lymphedema Framework (ITALF) which will take place in Rome at the end of October this year, but a more careful reading will expose that this is not so but rather represents a very helpful view suggesting opportunities and ways forward for those living with lymphœdema and those who care for them.
The organisers of this conference face many hurdles. They may be divided into several areas – you, dear Reader, may identify among others:
• Audience • Finance • Logistics • Speakers
Above these we have the purpose and outcome. We have to ask what do we want to achieve by the conference; what will be the outcome? This object is subservient to the overall objects of the organisers of the conference. For the ILF this is expressed in its motto Creating a better everyday life for people living with lymphoedema and related disorders. If what we do at the conference, however it is done, will not serve that purpose, then we might as well pack our bags to live in isolation on an unmapped island in the middle of the ocean.
The purpose and expected outcomes speak towards the necessary composition of the audience, and the determination of the selection of appropriate speakers.
Finance and logistics play their part by imposing limits on both the composition and the size of the audience, and the selection of speakers to address the messages that the organisers wish to convey both to the immediate audience and the watching world.
In an ideal world with unlimited resources it might be thought that we should bring together all patients, professionals and carers but would that achieve the objective? It may help the patients for one, two or three days, but what then? Likewise, we may have a specialised clinic, in which one nurse is outstanding. The patients delight in her manner, but even more so in the way she applies compression. It always works; there is no pain; the œdema flows away. If she is not on the shift, some patients look in and walk away to return later. One day the clinic is devastated. She is leaving. What will they do? She explains: I am going to teach others how to do it. If I stay here I can treat you, but then I am gone, but if I teach a dozen each year, there will be a gross to treat you after I have gone.
We do not live in an ideal world. We live in a world full of suffering, sickness, disease and dying. If we lived in an ideal world there would be no cancer, no lymphœdema, no sickness, no death. The best professionals must still stand in line for treatment when they need it. But if we teach and train the best professionals, who will be able, and are willing, to teach others then we shall be able to promote our goal of Creating a better everyday life for people living with lymphoedema and related disorders for as a result of the teaching each one of those professionals will go out better equipped to serve the patients who they have been called to serve.
Il paziente al centro deve poter esserci
That is rather a long introduction, but let us turn to what the article actually says. It is most helpful to look at the conclusion first for it raises some very important and significant issues. There are three questions:
• Una questione di politica sanitaria • Una questione culturale • Una questione di equità e partecipazione
That is health policy; culture; and equity and participation.
Health Policy
How can we influence health policy? The National Frameworks work together to lobby government for change. In some countries treatment, whilst available, is not available on the health tariff. In others it is not available at all. Who is to blame for that? Is it the government? Is it that there are no professionals who wish to work in the field? Is it that there are no advocates for the patients?
To influence health policy is a long term project. It requires grit and determination. It took Heather Ferguson ten years – Youtube – to achieve a change to health policy in the United States of America. On the other hand there are a few remarkable cases of rapid change by an accidental meeting or personal experience at a high level. Someone speaks with another family member about her treatment. The other family member remembers a similar description had been in a document which had passed over her desk a year before. She goes back to the office, and examines it. It was a funding application. The application now moves forward. Such exceptional cases are exceptional. The hard work must still and always be done first.
Culture
Culture can be the bane of our lives, can it not? How am I expected to behave in this place? Am I allowed to cross my legs, even at the ankles, or not? How do I use chop-sticks (a question for occidentals)? Is it the same way in China, Japan and Taiwan? How do I use a knife and fork (a question for orientals)? It is not the same in Europe and in North America. There are more difficult questions about the way we speak. When an opinion is offered, do we say: That’s not right! and expect a robust response demonstrating that it is right; or do we say: Let us explore that and follow up with a request that demands further demonstration of its rightness?
Anyone who has been to Uganda will understand that lymphœdema, in its filariasitic form at least, is caused by a curse. Well it is, but they, in Uganda, do not mean by it what we know in the West it means. The sufferer has been cursed by a neighbour or an enemy, perhaps in response to some supposed offence or merely out of caprice. Healing can only be obtained by a lifting of the curse. Such thinking is embedded in animistic, shamanic cultures. We have to overcome (overturn – but don’t let the social anthropologist hear you use that word) such thinking in order to deliver effective treatment.
In the West we have a culture which almost says: The doctor can fix it and in some countries we add and fix it for free. In other cultures there is an acceptance of an incurable condition, either because there is no health care or even basic healthcare is unaffordable.
So then, how do we approach different cultures? This is a matter which perhaps is largely ignored, but should be addressed.
Equity and participation
There is a sense in which if we could get over the first two points that this one would fall away. If health policy, culture and the needs of the population were perfectly aligned then there would be equity and participation. We do not however live in such an ideal world, and so the question of equity and participation do arise. The world is not fair. Resources are scarce and not shared equally.
We cannot run away from this. It must be addressed.
So in summary, we recognise that Resilia has raised that need to be addressed and the proper forum for that must be found. Resilia have indicated that there shall be further reflections in the coming days and that Lo farà con domande, qualche provocazione e anche un po’ di ironia. We hope that as well as the irony, there shall be further exposition of the matters raised here, perhaps even setting out a framework in which discussion and resolution may be found.
We agree on the importance of this. If the patient is to be at the heart of the work, he must be there.
Se il congresso costa, cerchiamo insieme chi può sostenerlo
Finance is one of the constraints that is imposed upon us. It affects us individually – not everyone can afford to buy a new luxury yacht every year, and employ the crew to sail it – nationally – consider the disparity of health services between one nation and another – and at every level in between.
Money is always difficult to talk about, but we must consider how the conferences are financed. Presently we look for sponsorship from industry, partners and attendance fees. We are constrained by what each contributor can afford.
Industry and other funding bodies are also constrained by their own masters’ allocation of funding. It may be easier in one year to obtain funding than another, because the partner is focussing on a different area of their own business. A partner seeking to expand its market in say Taiwan, may be more amenable to support a conference there than they would if we held one in Korea, say?
We then have to look at the other side. Knowing, or at least having an idea of what is available we have to plan the conference within that budget. Can we afford, assuming it were available, the Colosseum or do we need to look for something a little more modest, perhaps the Stadio Olimpico? Knowing the venue then, logistics comes into play and we plan space for the supporters, the exhibition area, and for the audience and speakers.
And to answer their question: We do believe it is important for patients to participate, so possiamo cercare un modo perché il costo della loro partecipazione non ricada proprio su di loro? This section strongly suggests that there is a way that could be found. After many years of struggling with funding, we are sure that we and ITALF would take on board, consider and examine carefully, whatever proposals Resilia may have in this regard.
Esistono pazienti più portati di altri?
The question about patient understanding, implying I think here a fitness to attend the conference, is difficult. We do believe that there are no first and second class patients, but we are, and Resilia, being a patient organisation, also must be, aware that not all patients are the same. How can we classify them? They are all human beings created equal in the words of the Declaration of Independence, which some honour this year.
We must be realistic. There a vocal patients and there are quiet patients. There are patients who a grateful for whatever treatment they are given, and there are patients who complain even when they have the gold standard treatment. There are patients who understand compression and lymph drainage but still remove their compression. There are patients who have little understanding of lymph drainage, but put up with the compression even when it itches. There are patients who can show other patients how to bandage, and there are others who never seem to get it. This is not to say we classify them. Each one is different, but is to be treated as best as possible having regard, in our relationships with them, to their different levels of understanding and their values. We must also bring into our thinking that having the same, equal, opportunities does not necessarily lead to the same, equal, outcomes.
The organisers of the ILF/ITALF conference have offered each patient organisation in Italy eleven free places for the conference. One of those places is for the president (by whatever title the organisation identifies him) of the organisation, the other ten are for patients chosen by the organisation. Five patient groups wrote to ITALF about this, and there are three more patient groups who benefit from this allocation, giving a total of eighty-eight free places for participating patients out of a capacity of six to seven hundred. How each organisation allocates the places offered is entirely up the itself. Resilia decides how to allocate the places.
There are many different way in which such an allocation could be made to the patients
• who will most benefit, • who will provide the greatest benefit to the work of Resilia • who enter a ballot and are selected • etc
They could also themselves seek sponsorship for their members to attend and use the ten allocated places to reduce the amount of sponsorship required, thus making available the same opportunities for their members.
If they are going to ask about benefit, then they need to think carefully, compassionately and objectively about individuals. One patient may think, and make a lot of noise about it, that he may benefit greatly by attendance, but you know he will not listen to anyone, and continue to complain as he does with you; whereas another will go, sit quietly listening, taking in every word, then come back to tell you about it, and ask about the things she did not understand. Who will benefit the most? Perhaps also ask, how much will it benefit other patients if the second patient goes?
We put the patient at the heart of all we do. If we send the first patient to the conference, he may be at the centre, but no one else is. If we send the second patient, every other patient with whom she comes into contact is placed at the centre, for they will all benefit from what she has learned.
Non è solo una questione di 300 euro
So we are left in agreement with all that our good friends at Resilia have said. This is not just a matter of €300. They have raised questions which affect us all, not just the 2026 conference, and to which we presently do not have all of the answers. Every organisation which supports people living with lymphœdema, every professional, every carer, faces such questions perhaps not on a daily basis, but regularly in all that they do.
The questions raised concerning health policy; culture; and equity and participation, should be put onto our agendas. Questions of resources must be addressed. Where do our resources come from, and how do we allocate them? Resilia has a membership fee of €25pa, ITALF likewise a patient fee of €15pa.They have other sources of funding which do not come directly from patients.
Care, compassion, objectivity, common sense all come into the answer to the question where?, and we work in the best possible way to keep patients at the heart despite the financial and logistical constraints imposed by our circumstances. Even if we could afford the Stadio Olimpico, is it not doubtful that we would have room enough there for all of our patients?
We provide what we can within our powers. We want patients to be at the heart of what we do, that is the Framework Projects. This is achieved by doing what we can towards Creating a better everyday life for people living with lymphoedema and related disorders. We work with patients, their organisations, professionals, carers, institutions, industry, other partners and governments to seek to achieve this.
One of the most effective ways is the dissemination of knowledge and understanding. If we give one professional, who has five hundred patients, a better idea of what better treatment is, we create a better life for five hundred people living with lymphœdema. Let us then, each one of us, do what we can, in our sphere of influence to enhance the lives of these individuals. We may never have contact with any one of them, but if someone mentions lymphœdema, or problems after cancer, ask the question: Have looked at the web-sites of ILF, ITALF, Resilia or the many other organisations who work in this field. ILF is a good place to start, then the National Frameworks to find out what is going on in a particular country to create a better everyday life for people living with lymphoedema and related disorders.
The writer apologises for using the word patient to describe people living with lymphœdema. The full description would irritate many a reader, whilst the initials PLWL may be an acronym in Welsh are unpronouncable for an English speaking reader. In any event the initials in Welsh would be PSBGL (Pobl sy’n byw gyda lymffoedema), so we have no acronym at all.
Original article in Italian and English from Resilia (un’associazione per le persone affette da linfedema – an association for people affected by lymphedema)
Il paziente è davvero al centro? 16 Set 2026
Il paziente è davvero al centro? Quando partecipare diventa una questione di accesso
Trecento euro.
Potrebbe sembrare semplicemente il costo di iscrizione a un congresso scientifico.
Ma quando quel congresso parla di una patologia cronica e tra le persone chiamate a pagare ci sono proprio coloro che con quella patologia convivono ogni giorno, quei 300 euro smettono di essere soltanto una quota di partecipazione.
Diventano una domanda.
Che cosa significa davvero mettere il paziente al centro?
Una richiesta nata dalle associazioni dei pazienti
In vista del Congresso internazionale dell’International Lymphoedema Framework, associato al Congresso nazionale ITALF, in programma a Roma dal 28 al 31 ottobre 2026, Resilia ETS e altre quattro associazioni impegnate nella tutela delle persone con linfedema hanno presentato una richiesta precisa.
Non è stata chiesta la gratuità di viaggi, pernottamenti, pasti o altri servizi.
È stato chiesto che i soci delle associazioni di pazienti potessero accedere gratuitamente ai lavori congressuali e all’area espositiva.
Una richiesta nata dalla convinzione che partecipare ai luoghi nei quali si discute di ricerca, cura, assistenza e futuro di una patologia non possa essere considerato un semplice servizio accessorio per chi quella patologia la vive ogni giorno.
La risposta e il problema che rimane
Nella risposta ricevuta, l’organizzazione ha illustrato le difficoltà e i costi legati a un congresso internazionale, dalla capienza della struttura alla sicurezza, dai servizi tecnici alla traduzione simultanea.
Sono state inoltre previste alcune possibilità di partecipazione gratuita: l’incontro dedicato a pazienti e associazioni del 28 ottobre, l’accesso integrale per alcuni rappresentanti e un numero contingentato di iscrizioni gratuite in determinate condizioni.
Comprendiamo che organizzare un evento scientifico di queste dimensioni abbia un costo.
Ma la questione che abbiamo posto non scompare.
Anzi, diventa ancora più evidente.
Non è solo una questione di 300 euro
Il punto non è stabilire se 300 euro siano tanti o pochi in assoluto.
Il punto è chiedersi quale posto vogliamo riconoscere al paziente.
Se il paziente è soltanto il destinatario finale della conoscenza scientifica, allora possiamo considerarlo semplicemente un partecipante a un evento.
Ma se parliamo di patient engagement, di partecipazione, di ascolto e di centralità della persona, allora il suo ruolo cambia.
Il paziente non è soltanto qualcuno di cui si parla.
È qualcuno con cui parlare.
È portatore di esperienza, bisogni, domande e conoscenza della propria quotidianità.
Ed è proprio su questa differenza che le associazioni hanno richiamato l’attenzione nella loro risposta: informare un paziente non significa necessariamente coinvolgerlo nei processi che lo riguardano.
Esistono pazienti più portati di altri?
Nella risposta ufficiale compare anche un’espressione che ci ha fatto riflettere: la possibilità che partecipino alcuni pazienti considerati “più portati” a questo tipo di relazione.
Ed è qui che la questione diventa anche culturale.
Che cosa significa essere un paziente “più portato”?
Chi stabilisce chi possiede le caratteristiche giuste per partecipare?
E soprattutto: può l’accesso alla conoscenza dipendere dalla disponibilità economica, da una selezione numerica o dalla capacità di qualcuno di rientrare tra i pazienti considerati più adatti?
Per Resilia la risposta parte da un principio semplice.
Non esistono pazienti di serie A e pazienti di serie B.
Esistono persone che convivono con una patologia e che dovrebbero avere, per quanto possibile, le stesse opportunità di conoscere, comprendere, partecipare e far sentire la propria voce.
Se il congresso costa, cerchiamo insieme chi può sostenerlo
Riconoscere che un congresso internazionale abbia costi importanti non significa necessariamente che tali costi debbano ricadere sui pazienti.
Se si considera davvero strategica la loro partecipazione, crediamo sia possibile cercare insieme forme alternative di sostegno: istituzioni, fondazioni, enti, sponsor e aziende che operano nei settori legati alla cura, ai dispositivi e ai servizi per linfedema e lipedema potrebbero contribuire specificamente a rendere accessibile la partecipazione dei pazienti.
Si potrebbe immaginare un fondo dedicato, un programma di accesso sostenuto dagli sponsor o destinare parte delle risorse provenienti dalle sponsorizzazioni e dall’area espositiva proprio a questo obiettivo.
Naturalmente con criteri di assoluta trasparenza e senza alcun condizionamento sui contenuti scientifici.
Non spetta a Resilia decidere quale modello economico debba adottare un congresso internazionale. Ma crediamo sia legittimo porre una domanda:
se consideriamo importante che i pazienti partecipino, possiamo cercare un modo perché il costo della loro partecipazione non ricada proprio su di loro?
Il paziente al centro deve poter esserci
Questa non vuole essere una battaglia contro un congresso scientifico.
Al contrario.
Proprio perché consideriamo questi appuntamenti importanti, crediamo che sia necessario interrogarsi sul modo in cui i pazienti possono prendervi parte.
Non chiediamo che organizzare un congresso non abbia un costo. Chiediamo di riflettere su chi debba sostenerlo quando la partecipazione dei pazienti viene dichiarata parte integrante dell’evento.
Nei prossimi giorni Resilia ETS porterà questa riflessione anche sui propri canali social.
Lo farà con domande, qualche provocazione e anche un po’ di ironia.
Perché dietro una quota di iscrizione apparentemente ordinaria esiste una questione molto più grande.
Una questione di politica sanitaria. Una questione culturale. Una questione di equità e partecipazione.
Quando diciamo che il paziente deve essere al centro, forse dovremmo cominciare dalla cosa più semplice.
Permettergli di esserci.
L’Associazione contro il Linfedema
Resilia ETS
è composta da un gruppo di Medici specialisti, Fisioterapisti, Pazienti, familiari e amici.
L’obiettivo primario dell’Associazione è fornire informazioni semplici e chiare sulla Patologia del Linfedema, specie quella che colpisce i malati di tumore.
Is the patient really at the centre? September 16, 2026
Is the patient truly at the centre? When participation becomes a matter of access.
Three hundred euros.
It might seem simply the cost of registration for a scientific congress.
But when that congress talks about a chronic disease and among the people called to pay there are precisely those who live with that disease every day, those 300 euros stop being just a participation fee.
They become a question.
What does it really mean to put the patient at the centre?
A request born from patient associations
In view of the International Congress of the International Lymphoedema Framework, associated with the ITALF National Congress, scheduled in Rome from 28 to 31 October 2026, Resilia ETS and four other associations engaged in the protection of people with lymphœdema have submitted a specific request.
Free travel, overnight stays, meals or other services were not requested.
It was requested that the members of the patient associations be able to access the congress and the exhibition area free of charge.
A request born from the conviction that participating in places where research, treatment, assistance and the future of a disease are discussed cannot be considered a simple accessory service for those who experience that disease every day.
The answer and the problem that remains
In the response received, the organization illustrated the difficulties and costs associated with an international congress, from the capacity of the structure to security, from technical services to simultaneous translation.
Some possibilities for free participation have also been provided: the meeting dedicated to patients and associations on 28 October, full access for some representatives and a limited number of free registrations under certain conditions.
We understand that organizing a scientific event of this size comes at a cost.
But the question we have posed does not disappear.
Indeed, it becomes even more evident.
It’s not just a matter of 300 euros
The point is not to establish whether 300 euros is a lot or a few at all.
The point is to ask ourselves what place we want to recognize for the patient.
If the patient is only the final recipient of scientific knowledge, then we can simply consider him a participant in an event.
But if we talk about patient engagement, participation, listening and the centrality of the person, then his role changes.
The patient is not just someone we talk about.
He’s someone with whom to.
He is the bearer of experience, needs, questions and knowledge of his daily life.
And it is precisely on this difference that the associations drew attention in their response: informing a patient does not necessarily mean involving him in the processes that concern him.
Are there patients who are more inclined/apt/able/talented than others?
In the official response there is also an expression that made us think: the possibility that some patients considered “more inclined” to this type of relationship participate.
And this is where the issue also becomes cultural.
What does it mean to be a “more talented” patient?
Who determines who has the right characteristics to participate?
And above all: can access to knowledge depend on economic availability, on a numerical selection or on someone’s ability to be among the patients considered most suitable?
For Resilia, the answer starts from a simple principle.
There are no first-class patients and second-class patients.
There are people who live with a disease and who should have, as far as possible, the same opportunities to know, understand, participate and make their voices heard.
If the congress costs, let’s look together for those who can support it
Recognizing that an international congress has significant costs does not necessarily mean that those costs should be borne by patients.
If their participation is considered truly strategic, we believe it is possible to look for alternative forms of support together: institutions, foundations, bodies, sponsors and companies operating in sectors related to treatment, devices and services for lymphœdema and lipedœma could specifically contribute to making patient participation accessible.
One could imagine a dedicated fund, an access program supported by sponsors or allocate part of the resources from sponsorships and the exhibition area precisely to this goal.
Of course, with criteria of absolute transparency and without any conditioning on scientific content.
It is not up to Resilia to decide which economic model an international congress should adopt. But we believe it is legitimate to ask a question:
If we consider it important for patients to participate, can we look for a way to ensure that the cost of their participation does not fall on them at all?
The patient at the centre must be able to be there
This is not meant to be a battle against a scientific congress.
On the contrary.
Precisely because we consider these appointments important, we believe that it is necessary to ask ourselves how patients can take part in them.
We do not ask that organizing a congress does not have a cost. We ask to reflect on who should support it when the participation of patients is declared an integral part of the event.
In the coming days, Resilia ETS will also bring this reflection to its social channels.
He will do so with questions, some provocation and even a bit of irony.
Because behind a seemingly ordinary registration fee there is a much bigger issue.
A question of health policy. A cultural question. A question of equity and participation.
When we say that the patient must be at the centre, perhaps we should start with the simplest thing.
Allow him to be there.
The Association Against Lymphœdema
Resilia ETS
It is made up of a group of medical specialists, physiotherapists, patients, family members and friends.
The Association’s primary goal is to provide simple and clear information on lymphœdema, especially as it affects cancer patients.
‘Ghana was the crime scene’: The country leading the demand for slavery reparations presents three quite different perspectives. The wicked West is perhaps the mostly fondly held in the present age, but that is to disregard the rôle that at least one of those nations played in both the abolition of the trade and slavery itself, though not without much opposition from many who lived in West Africa even until living memory. That of King Tackie Teiko Tsuru II, which is not given the space it rightly deserves in this article, is the least likely to be heard, and most likely to be rejected, but in Coco’s understanding probably much closer to the truth that many would wish to acknowledge. The third view is that which describes the corruption of some of the modern efforts to alleviate some of the poverty, which existed before even the West was involved, by the personal economic interests of organisations involved.
Editors, if not reporters, really should understand the meaning of words but often they seem to mis the point and are happy to quote a putatively authoritative figure even when he speaks out beyond his realm of expertise. It is very easy to do that, speak outside your realm of expertise, as Coco knows only too well, and in professional life must take especial care not to stray into areas which are either forbidden due to a lack of the appropriate piece of (electronic) paper or inappropriate for lack of skill.
Coco sometimes finds it difficult to see the wood for the trees when trying to decide what is really important about recent pieces of news speculation over the contents of which has been perhaps been suppressed for six or more years. When the Director of a Government organisation resigns, for personal not political reasons, and on the last working day, 19 June 2026, releases that which had been classified, then you, dear reader, might be forgiven for thinking that perhaps the resignation was political after all, and perhaps more so when the content of the disclosures are considered.
But to think in that way would be to impugn the integrity of the outgoing directress, whom we could not call a whistle-blower for she was acting in her official capacity as Director of National Intelligence of the government of the United States. The press release may be found here: Fauci Funded Wuhan Lab Research That Sparked COVID.
Perhaps Coco may be forgiven for thinking that indulgences had ceased after 31 October 1517 following the posting by Martin Luther of his 95 theses at Wittenberg five hundred years ago, but what do we find? Not only are indulgences still available, there are some who think that even our governments should provide them.
Would you, dear Reader, like permission from your government to break the laws without fine or penalty for four years? You would be free to do whatever you wished, at whatever cost to anyone else, and get away with it. But hold on a moment, if you may obtain such an indulgence from your government, may not another, and another? What then? The other does something that affects, damages and hurts you, and now you have no redress. Is this really a good idea?
