Questions & Criticism Answered

Alongside many warm and encouraging responses to the 2026 Amsterdam ISLC-PAIS Conference, we have also received critical questions and concerns, particularly on social media. Many (not all) of those questions are legitimate and deserve answers.

Why this page exists. This is the first edition of the ISLC-PAIS Conference and it is being organized by a very small team. We simply do not have the capacity to respond to every individual post or discussion online. This page brings 20 of the recurring questions and criticisms together in one place so that they can be answered properly.

Who is answering. I am Michael Chapman, one of the two board members of the ISLC-PAIS Conference Foundation, a former founding member of the ISLC-PAIS Society, and a person who has been living with Long COVID for more than six years. The Foundation and the Society work together but are separate organisations and legal entities. Where a question concerns the Society rather than the conference, I will make that clear rather than answer on its behalf. The Conference Foundation is accountable for the conference itself. The answers on this page are written primarily from my perspective as a Long COVID patient, organiser and board member, and do not necessarily represent the personal views of every speaker, board member, partner or other person involved.

What have we done so far. I have spoken directly with critics, patient advocates and protest groups because I feel a personal responsibility for this conference and because I take criticism seriously, both where I believe it is justified and where I believe it is based on misunderstandings or inaccurate information that may unfairly harm the conference and/or fellow Long COVID patients that are also involved.

Where we stand. Some of the criticism directed at the conference is justified, but we are a very small team and simply cannot prioritize everything we would like. Where I believe we have got something wrong, I will say so. Other criticism appears to have arisen from misunderstandings, incomplete information or miscommunication. In a fast-moving and sometimes highly charged discussion, information can quickly become simplified or distorted, intentionally or otherwise. Rather than arguing about that on social media, I would rather set out the facts and our reasoning here as clearly as I can.

  • The aim of this page is simple: to answer questions openly, directly and in one place to the best of our ability

    Long COVID was identified, named and defined by patients. Any body working in this field that does not treat that as central will get things wrong. Some of the criticism directed at us is evidence that we have not consistently met that standard. Where that is the case, it is written below rather than smoothed over.
    Michael Chapman
    Secretary ISLC-PAIS Foundation | Long COVID patient

All questions

The Conference, the Society, and the term PAIS

The conference is organised by Stichting ISLC-PAIS Conference, an independent Dutch non-profit foundation (Chamber of Commerce number: 99766647, VAT number NL869124225B01).

The Foundation currently has two board members: Associate Professor Rob Wüst (VU University Amsterdam), Chair, and Michael Chapman, former small-business owner and Long COVID patient, Secretary. We are currently seeking a third board member to serve as Treasurer, as the Treasurer who had been involved since the Foundation’s establishment was unfortunately forced to step down due to a deterioration in health circumstances within his family.

The Conference Foundation and the ISLC-PAIS Society are separate organisations. However Rob Wüst is a Founding Member of the Society; Michael Chapman was initially involved as a Founding Member but stepped back for health reasons. The two organisations collaborate, but they are legally, financially and organisationally independent.

In practice, decisions about the conference, including the program, speakers, ticketing, access and patient sessions, are made by the Conference Foundation, and we are accountable for them.

Questions about the Society itself should be directed to the Society via www.islc-pais.com.

Last updated 15 August 2026

The conference brings together researchers and clinicians working on Long COVID and on other chronic conditions that can follow infection. The reason is practical and scientific: many of these researchers are investigating overlapping questions, such as viral persistence, immune dysregulation, vascular dysfunction, autonomic dysfunction, post-exertional symptom exacerbation and treatment response, but they often work in separate disease silos and rarely have the opportunity to meet in person.

We use PAIS at the conference as an umbrella for that shared scientific space. It is not intended to replace disease-specific diagnoses or to suggest that Long COVID, ME/CFS and other conditions are the same disease. Long COVID remains Long COVID. ME/CFS remains ME/CFS. Where biology overlaps, we think it is worth studying that overlap. Where it differs, those differences are equally important.

We also understand the criticism that an umbrella term can take on meanings beyond the intentions of the people who use it. That broader question, what PAIS actually adds, and what risks come with the category, is addressed separately in Q3 and Q8.

Last updated 14 August 2026

Of all the concerns raised with us, this is the one we have heard most consistently and most forcefully. The answer cannot simply be that PAIS is needed in order to compare diseases. It is not. Researchers can, and do, compare Long COVID, ME/CFS, POTS and other conditions without an umbrella term.

What PAIS may add is a shared research framework for questions that recur across infection-associated chronic illness: how to study viral persistence, immune dysregulation, autonomic dysfunction, endothelial injury, post-exertional symptom exacerbation, patient stratification and trial design across otherwise distinct diagnoses.

In practical terms, that can mean shared methods, comparable datasets, common outcome measures, cross-disease studies where appropriate, and bringing together researchers who would otherwise work in separate silos.

But that potential benefit only exists if disease-specific differences remain explicit. PAIS should not become a substitute diagnosis, a claim that the included conditions are biologically equivalent, or a reason to apply findings from one disease to another without evidence.

That is also where the criticism becomes important. Talking to a few protest groups, I now understand the real question is not simply “Can PAIS be useful?” but “Does the value of a shared research framework outweigh the risk that the category becomes too broad, vague or clinically misused?”

We do not think that question should be answered by assertion. It will be put directly to the Society and discussed publicly during Plenary 4, “Development of New PAIS Society,” on Saturday 29 August at 09:30, which includes a panel discussion and also during the Patient Recap Livestream Session that same day between 15:00 and 17:00.

We cannot promise what conclusion that discussion will reach but we can promise the question will not be quietly dropped.

Last updated 14 August 2026

The Conference Foundation has not created a definitive list of diseases that “belong under PAIS”, and the program should not be read as such a classification. The 2026 program focuses mainly on Long COVID and ME/CFS, with additional work involving POTS, Lyme disease and other post-infectious conditions.

Scientific program decisions were made by the Scientific Programme Committee, consisting of researchers and clinicians, with regular consultation with various patient representatives.

At the same time, I think the Committee did an excellent job and produced a scientifically strong program. There was also always a willingness to consider speakers and topics I suggested.

We also contacted patient organisations internationally, but the response was limited and our outreach came too late. That needs to improve as well.

Last updated 14 August 2026

No. Long COVID and ME/CFS are not treated as interchangeable conditions in our conference program.

Long COVID is studied throughout the program as a distinct disease following SARS-CoV-2 infection, including research on viral persistence, vascular and endothelial dysfunction, neurological disease, autonomic dysfunction, paediatric Long COVID, biomarkers and clinical trials.

Where Long COVID and ME/CFS appear together, the purpose is generally to compare them, investigate possible shared mechanisms or identify where they differ. Comparison is not the same as equivalence.

We do understand the concern that findings from one condition should not simply be applied to another without evidence. We agree with that. Any shared mechanism or treatment approach has to be demonstrated scientifically rather than assumed.

Last updated 15 August 2026

In our opinion conflation begins when similarities between conditions are treated as evidence that they are the same disease, have the same cause, or should receive the same treatment, without sufficient evidence.

We would also regard it as conflation if findings from one condition were simply assumed to apply to another, or if a shared research framework led clinicians to ignore disease-specific differences.

What we do not regard as conflation is comparing conditions, studying possible shared mechanisms, or presenting research on them at the same scientific meeting. Those approaches can reveal both similarities and important differences.

For us, the principle is simple: comparison should lead to greater precision, not less. Where the evidence shows overlap, that should be investigated. Where it shows differences, those differences must remain explicit.

Last updated 14 August 2026

The terminology is not perfect, and we understand why some people wrote to us and questioned it.

“Post-acute” is intended to describe illness continuing beyond the acute phase of an infection. It should not be read as a claim that the pathogen, viral material or downstream biological effects have necessarily disappeared. Persistent infection or viral persistence is itself an active area of research.

“Infection” refers here to an illness associated with an infectious trigger. We recognise that the wording can be misunderstood, particularly because “infection” can also imply transmissibility in everyday language.

“Syndrome” is also contested. In this context it is used as an umbrella research term, not to suggest that the underlying cause is unknown, unimportant, or should no longer be investigated.

We therefore regard PAIS as working terminology rather than a settled biological definition. Questions about whether the terminology should ultimately be retained or revised are legitimate and should remain open to scientific and patient discussion.

Last updated 17 August 2026

We understand the concern. Broad labels can become harmful if they replace disease-specific diagnoses, blur important biological differences, or lead clinicians to apply findings from one condition to another without evidence.

That is not how we intend PAIS to be used. For this conference, PAIS is a research framework for bringing together work on distinct infection-associated chronic conditions while keeping their differences explicit.

We also recognise that terminology can acquire meanings beyond its original intent. That is why we think the scope, safeguards and clinical use of the term need to be discussed openly rather than assumed.

Last updated 14 August 2026

Who was consulted, and who is on the program

No. We think the program itself is the clearest answer to this.

To make this transparent, we published a highlighted version of the full program: every mention of Long COVID is marked in yellow and every mention of ME/CFS in blue.

Across the program, Long COVID is mentioned 57 times and ME/CFS 24 times. These are mentions rather than a classification of individual talks, but they make clear that this is not a program dominated by ME/CFS.

Long COVID is represented across immunology, paediatrics, neurology, cardiovascular and autonomic dysfunction, biomarkers, clinical trials, viral persistence and treatment.

Rather than take our word for it, you can view the highlighted program here.

Last updated 14 August 2026

There is patient involvement, but not enough structured involvement from Long COVID patient organisations early in the process.

One of the two board members of the Conference Foundation is a Long COVID patient, so lived experience is represented directly at board level. But that should not be confused with representing the wider Long COVID community: no individual patient can reasonably claim to speak on behalf of everyone affected by the disease.

We did identify and contact Long COVID patient organisations internationally and invited engagement hoping for help for our Patient Recap Session, but the response was very limited and, in hindsight, our outreach was not systematic or persistent enough. We need to improve that for future editions. We simply need more help.

At the same time, we think it is important to distinguish patient involvement from scientific program selection. Scientific content is assessed by people with the relevant scientific and clinical expertise, while patient involvement is essential for priorities, accessibility, representation and how research is communicated.

For future editions, we want patient involvement to begin earlier and be more structured, including meaningful Long COVID representation in the planning process.

Last updated 16 August 2026

Yes, but fewer and less prominently than there should be. Both halves of that sentence matter.

On the board one of the two current members of the Conference Foundation board is himself a Long COVID patient.

On the program: Stichting Long COVID (Chair and Co-founder Ellen Bark-Lindhout) speaks on the opening day and they are one of our sponsors, Long COVID patient Narita Saija (PostCovidNL) will offer her perspective during the “Why is policy still failing Long COVID & PAIS patients in many countries”. Individual Long COVID patient advocates hold chairing roles: like dr. Asad Khan chairs three sessions and Emily Kate Stephens is producing and hosting the Patient Recap Session. So the claim that no Long COVID organisation is involved is not accurate.

During the preparation of the conference, we have had many conversations with individual patients, patient advocates and patient organisations. We have also spoken directly with people and groups who have been strongly critical of the conference. We continue to be open to those conversations, although as the conference approaches our capacity for individual discussions is necessarily more limited because the small organising team is now focused on delivering the event.

Last updated 17 August 2026

How the Scientific Program was decided

Submitted abstracts were reviewed by members of the International Abstract Committee.

Before the review process, I mapped the areas of expertise of the committee members. Abstracts were then assigned to reviewers as far as possible according to that expertise. We did this manually and a second time with AI-assisted matching; interestingly, the two approaches produced very similar allocations.

Reviewers assessed their assigned abstracts independently. They did not see each other’s scores or assessments while reviewing.

Invited speakers were selected separately by the Scientific Program Committee. I was not personally part of that selection process and therefore cannot speak on their behalf.

Last updated 14 August 2026

The scientific program is developed by the Scientific Program Committee, whose members bring different areas of expertise. As a Long COVID patient and one of the organizers I was not a member of the Scientific Program Committee. However, I was able to suggest speakers and topics, and several of those suggestions were taken up.

Importantly, the core program was already largely in place before conference sponsorship was secured. No sponsor has imposed a speaker or presentation on the program.

A substantial part of the final program also comes from the research community itself. We received more than 200 abstracts, which were reviewed by an International Abstract Committee.

The selected abstracts therefore add another layer to the program: they reflect research that is actually being carried out now, including work by early-career researchers and newer voices in the field. In the published program, these contributions can be identified by their Abstract ID.

In that sense, the program is shaped both by the Scientific Program Committee and by the current direction of the science itself.

Last updated 14 August 2026

A scientific conference has a responsibility to take speaker selection and scientific quality seriously. We do. Long COVID is a field in which misinformation, commercial interests and premature claims can have real consequences for patients. That is one reason why abstracts were independently reviewed and why invited speakers were selected through a Scientific Program Committee.

At the same time, presenting research at a conference is not the same as endorsing every conclusion, hypothesis or public statement ever made by a speaker. Scientific meetings exist in part so that evidence can be presented, questioned, challenged and discussed by other experts.

If there are specific concerns about a presentation, paper or scientific claim in our program, we want to hear them. Send us the concrete example and the evidence supporting the concern, and we will put it to the Scientific Program Committee. We will not, however, use this page to issue broad judgments about the credibility of individual researchers based on general allegations.

Last updated 14 August 2026

History, framing and changing information

We do not regard Long COVID as an extension of ME/CFS history, and the conference program does not present it that way. We fully understand that Long COVID has its own history, beginning with patients identifying, naming and describing the condition in 2020 and pushing for its recognition.

At the same time, research into ME/CFS and other infection-associated chronic illnesses predates Long COVID and contains scientific and clinical lessons that may be relevant to some questions now being studied in Long COVID. Referring to that earlier work does not make Long COVID a subtype of ME/CFS or subordinate its history to another disease.

Last updated 16 August 2026

No. We do not support replacing the etiological basis of Long COVID with a purely syndromic model.

This is not an abstract concern for us. One of the Conference Foundation’s board members has Long COVID and spent years fighting a disability insurer that argued the condition was not medically objectifiable. The consequences of reducing a biologically driven disease to a vague symptom syndrome are therefore very real to us.

Long COVID has a known infectious trigger: SARS-CoV-2. Using PAIS as a research framework does not change that, and it should never be used to erase disease-specific causation, mechanisms or diagnosis. The purpose of bringing different infection-associated chronic conditions together is to compare mechanisms where there may be overlap, not to replace their etiologies with one generic syndrome model.

Our scientific program reflects that approach: it includes work on viral persistence, immune dysregulation, vascular and endothelial pathology, autonomic dysfunction, neuroinflammation, biomarkers and targeted treatment. These are attempts to understand underlying biology, not to stop at symptom description.

Last updated 14 August 2026

Some changes are unavoidable. Speakers withdraw, abstracts are withdrawn, and in this field some presenters are themselves living with Long COVID and may find that they are no longer well enough to travel. When that happens, sessions sometimes have to be adjusted.

But the larger reason some information has appeared late is simpler: this first edition has been built by a very small team with limited resources and some of them deal with Long COVID on a daily basis.

Without sufficient funding we could not simply hire a professional event agency or a group of freelancers to carry the workload from start to finish.

Sponsorship also came relatively late, which meant that some parts of the conference had to be simplified or dropped, including parts of the social program. We made those choices to protect the scientific core of the meeting and keep the event financially manageable.

We do think there is value in keeping the conference primarily in the hands of patients, clinicians and scientists rather than turning it over to a commercial event company. But that also means accepting that a first edition built with limited capacity will not always run as smoothly as a mature, fully funded conference.

Hopefully, we will secure more funding earlier and attract more production capacity.

Last updated 16 August 2026

Access, safety and cost

There is no live remote access to the scientific conference itself.

The scientific program is highly technical and aimed primarily at researchers and clinicians. For most patients, four days of specialist presentations would not be the most accessible way to follow the conference.

That is why we created a separate Patient Recap Session on Saturday afternoon. It will summarize the most important scientific and clinical developments in accessible language and include patient questions. Access costs €15 with an additional discount available through participating patient organizations.

For patients who are medically or scientifically knowledgeable and want access to the full conference content, we are also preparing a patient Video-on-Demand option that will cost € 95.

We recognize that this information should have been available earlier. For a long time, however, it was genuinely uncertain whether we would have the budget to organize a Patient Recap at all. We are now able to move forward, but only by asking for a small contribution from participants. We have had to make these accessibility options financially sustainable rather than simply promise services we could not afford to deliver.

Last updated 16 August 2026

We cannot eliminate the risk of reinfection at an indoor conference, and we do not want to pretend otherwise. Our approach is therefore to reduce risk through multiple layers of protection.

We will use the venue’s air-handling systems as intensively as possible and ventilate naturally wherever practical. Air disinfection will be used in most areas through enclosed UV-C air-disinfection units.

Aranet is supporting the conference with continuous CO₂ monitoring across the venue, allowing us to identify when ventilation needs attention. We will also have 400 FFP masks available on site, donated by Dr. Rae Duncan, and we strongly encourage the use of high-quality masks indoors.

Hand-disinfection points will be available throughout the venue.

We are realistic about the limits of these measures. No intervention can make a large indoor gathering risk-free. What we can do is take reinfection seriously, monitor conditions throughout the conference and reduce avoidable risk wherever we reasonably can. The criticism we think is least deserved is the claim that attendee safety was not taken seriously from the start.

Last updated 17 August 2026

No. The conference is organized by Stichting ISLC-PAIS Conference, an independent Dutch non-profit foundation. The Foundation has no shareholders or owners who can take profits out of the organization.

Its statutes explicitly state that the Foundation does not aim to make a profit. They also state that board members cannot receive remuneration for their role, apart from reimbursement of expenses and limited attendance fees where applicable.

Sponsorship income and support has been lower than hoped, and we are still trying to close part of the remaining gap through conference registrations, Video-on-Demand access and the Patient Recap.

Income is used to cover the real costs of organizing the conference: venue, catering, technical production, recording and editing, administration, travel or accommodation support where needed, and professional freelance event management & production support.

As the conference approaches, freelancers have been engaged to help deliver the production and operations. Most of the people who have built the conference alongside this work have full-time jobs or other professional responsibilities, so bringing in paid specialist support at this stage is necessary to deliver the event safely and professionally.

If the Foundation were ever dissolved, its statutes require any remaining surplus to go to a public-benefit organization rather than to individuals.