<div>ENGLISH TRANSLATION BELOW
</div>
<div>Not Recovered Belgium wil strijden voor de noden van alle patiënten met post-acuut-infectueuze ziekten zoals ME/CVS, Long-Covid, POTS, Lyme en Fibromyalgie.
</div>
<div><br />
</div>
<div>We stellen vast dat:
</div>
<div><br />
</div>
<ul>
<li>Nog elke dag mensen deze ziekten oplopen en bijgevolg langdurig ernstig beperkt zijn
</li>
<li>De levenskwaliteit voor mensen met een ernstige vorm van de ziekte zeer laag is, waardoor sommigen enkel nog een uitweg zien in euthanasie.
</li>
<li>De kennis van deze ziekten bij artsen ontbreekt wat leidt tot late en verkeerde diagnoses
</li>
<li>Artsen, kinesisten, ergotherapeuten PEM onvoldoende erkennen en bijgevolg verkeerde adviezen en behandelingen geven met het verergeren van de ziekte als gevolg
</li>
<li>Er onvoldoende duidelijkheid is over het soort specialist die de ziekte moet opvolgen, een gecoördineerde aanpak ontbreekt.
</li>
<li>Er onvoldoende kennis is over symptoombestrijdende medicatie
</li>
<li>Nog steeds therapieën worden toegepast die ineffectief en contraproductief zijn (cognitieve gedragstherapie, graduele oefentherapie)
</li>
<li>Er nog steeds artsen zijn die denken dat de ziekte ‘tussen de oren zit’
</li>
</ul>
<div><br />
</div>
<div>Not Recoverd Belgium en de patëntenverenigingen vragen om
</div>
<div><br />
</div>
<ul>
<li>Een gecoördineerde aanpak, gebaseerd op de laatste wetenschappelijke inzichten;
</li>
<li>Betere kennis van multisysteemziekten bij huisartsen en specialisten, meer aandacht voor deze ziekten binnen de opleiding;
</li>
<li>Het beter herkennen van PEM (inspanningsintolerantie of post exertional malaise) en POTS (Posturaal Orthostatische Tachycardiesyndroom);
</li>
<li>De oprichting van onafhankelijke kenniscentra waar ook off-labelmedicatie onder wetenschappelijk toezicht wordt toegediend;
</li>
<li>Meer biomedisch onderzoek, mede gebaseerd op contacten met patiënten in de kenniscentra;
</li>
<li>Not Recovered Belgium en de respectievelijke patiëntenorganisaties te betrekken bij al deze bovenstaande punten: ‘nothing about us without us’.
</li>
</ul>
<div>___________________________________________________
</div>
<div>English version:
</div>
<div>Not Recovered Belgium wants to fight for the needs of all patients with post-acute infectious diseases such as ME/CFS, Long-Covid, POTS, Lyme and Fibromyalgia.
</div>
<div><br />
</div>
<div>We note that:
</div>
<div><br />
</div>
<ul>
<li>People still contract these diseases every day and are therefore severely disabled for a long period of time
</li>
<li>The quality of life for people with a serious form of the disease is very low, which is why some people only see a way out in euthanasia.
</li>
<li>Doctors lack knowledge of these diseases, which leads to late and incorrect diagnoses
</li>
<li>Doctors, physiotherapists, occupational therapists do not sufficiently recognize PEM and therefore give incorrect advice and treatments, resulting in the worsening of the disease
</li>
<li>There is insufficient clarity about the type of specialist who should monitor the disease, and a coordinated approach is lacking.
</li>
<li>There is insufficient knowledge about symptom-fighting medication
</li>
<li>Therapies are still used that are ineffective and counterproductive (cognitive behavioral therapy, graded exercise therapy)
</li>
<li>There are still doctors who think that the disease is 'in your head'
</li>
</ul>
<div><br />
</div>
<div>Not Recovered Belgium and the patient associations are asking for this
</div>
<div><br />
</div>
<ul>
<li>A coordinated approach, based on the latest scientific insights;
</li>
<li>Better knowledge of multisystem diseases among general practitioners and specialists, more attention to these diseases within training;
</li>
<li>Better recognition of PEM (exercise intolerance or post exertional malaise) and POTS (Postural Orthostatic Tachycardia Syndrome);
</li>
<li>The establishment of independent knowledge centers where off-label medication is also administered under scientific supervision;
</li>
<li>More biomedical research, partly based on contacts with patients in the knowledge centers;
</li>
<li>To involve Not Recovered Belgium and the respective patient organizations in all of the above points: 'nothing about us without us'.
</li>
</ul>

Saskia Willems

Roger Maes 

Michel Reyniers 

Elke Delbare

Lizzy Smits

patrick gillis

Marijke De Muyer

Carmen Van Looy

Mieke Beselaere

Griet De Lanoo

Stien Schoonbaert

Lief Speelman

Vicky De Windt

Lizzy De Lobel

Sabine Bovendaerde

Anonymous

Vrienden Ingrid Somers 

Donaties cash, overschrijving en Paypal Dodentocht

Dascha Van Beurden

Biomed. ond. Long Covid, MECVS, POTS, Lyme, Fibro

platform

Platform is iOS

Android

Adyen Google Pay Development Audience

$opt_dummy_attribute

English only

Deprecate Stripe Legacy

dyn_template_ids

Adyen V6 Bene Transfer & MyMoney Campaign Organizers - test01

Bene transfer V6 and AdyenV6MyMoney Campaign Organizers - production

OneTrust next-app audience

fundCountryCode

NextDoor Share Option Users

Fundraisers with Reactions feature capability

fundCurrencyCode

US + Non-charity COs Only

locale

fund country is US and user language is English

personId

comms-internal-person-ids

Enhanced Story Experience Users

Suggested Goal Experience Users

user language is English and fund country: US, AU, DK, FI, IE, NO, SE, CA, GB; 

Poster share - new funds eligible (newest 9/18)

Streaming widgets beta user

paymentProcessor

3DS payment method

user language is English and fundCountry: US, AU, DK, FI, IE, NO, SE, CA, GB; 

GoFundMe Employees

ipAddress

Mark Rieth IP Address

Version 9.2.0 and above

Fund is in English speaking country

desktop

Android v12.11.0 and above

Platform is Android

paymentMethodType

checkoutType

Payment method type group to be vaulted on success

admin pr kit prod

EUR Donation Upsell

Share Text generation Skip Fundraiser

(prod) new funds eligible for amp12 (UGC gallery)

fintrac_cad_idv_form_v2 audience

paymentProcessorAccountId

fallback mode accounts

proCampaignId

p2p legacy startfundraising page

AMP24 New Funds Only PROD (DO NOT MODIFY)

countryCode

charityId

UKCharities

Federated Search Internal Testing

route.pathname community

US Donation Upsell audience 

Auto Thanks Feature Audience

Supporter Comments Eligible Funds

International Only

fundId

braze fundraiser group 

Payment Identity Transfers ATO Risk Check (Targeted) - Production

Fundraiser Saved Payment Method Rate Limit Bypass (Production)

leaderboard-partner-id-audience-givepanel

Version 9.2.1 and above

AUD Donation Upsell audience

fundraiserCountryCode is US/EN

Active Fundraiser - Smart Default Cadence

DAF Internal

Vault on success card payment method

Platform is iOS v11.0.0 and above

Desktop users

Person ids

United States (US) users

allow yuno fundraisers for test

Mexico country code

Posters INTL

NPO Profile Opted-In

iOS at or above 12.4.0

non-US recurring donors

Canada Campaign Owner Group

Fundraiser Without Meta Link

Scheduler payment tester gorup

charityCommunityId

Charities allow to be claimed unclaimed (PRD)

Canada (CA) users

currencyCode

UC Tipping v20250115 International

pymk_production_xplr_fe_team

Android at or above 12.2.0

Profile photo entry point audience

smart goals (fundraiser/manage) on test01

Activity Tracking v1 Beta Testing

writePath

Stream Notification

start gfm intl allowed locales

Platform is iOS v11.2.0 and above

unclaimed charities

prod_ach_audience

AI Chatbot Audience

amp13 only new funds (prod) (anyword auto)

UC Flow Enabled (Prod)

Payment Identity Beneficiary Verification - Production

shared notification bell audience

Custom users

ach frontend audience

Android v11.0.0 and above

Users Receiving Payments Paused Notifications

smart goals test01

Manage Coach - US English Organizers Only + new funds only

Team EGG - IP Address list

Fundraiser Without Instagram Deep Link

Native 11.4.0 and above

UC Tipping v20250107

Users Receiving Braze KYC Validation Failed

Native 11.3.0 and above

Influencer - Prod

US fundraisers and US users

ai_title_page

anyword

openai

control

manual_entry

userEmail

template_id

userId

fundUrl

isCharityCo

email

appVersion

shouldBucketIntoExperiment

partnerId

donationCadence

isActiveFundraiser

isPartner

isMobile

npoProfileOptIn

fundIsLinkedWithMeta

hasSessionDonation

isCampaignOwner

fundHasInstagramDeepLink

Native 11.4.0 and higher

New funds eligible - Video Sharing (PROD)

GB Donation Upsell audience 

Auto Thanks V3 Rollout Audience

Thank you V3 testing whitelist

isRecurringFriendly

Is Recurring Friendly

Excluded funds - Video Sharing

Logged In Users

CH Donation Upsell audience

Android v10.6.0 and above

userCurrencyCode

Localized Currency

v11.5.0 and above

testAudience

pathname

Survicate

appVersion is at or above 12.8.0

Non-charity fund

isChallengeFundraiser

challenge-fundraisers

Payment Identity Launch Verification - Production

New funds eligible - Posters v2

CAD Donation Upsell Audience

Braze Email Tester

NPO Profile Opted-Out

iOS App Version

hasKnownDonors

PYMK has donors

iOS v12.3.0 and above

Biomed. ond. Long Covid, MECVS, POTS, Lyme, Fibro

Still €7,850 to go. Help us build momentum.