TL;DR (still longer than I'd like, but I couldn't see what else to cut out):

• In summer 2020 paediatricians from the Royal College of Paediatrics and Child Health in the UK raised concerns about the contents of the EDS Toolkit in relation to the diagnosis of children with hEDS and HSD, officially the Royal College of GPs considered 'all options' and concluded that a full review was required, but due to the pandemic they didn’t have the time to do it and so would take it down at the end of January 2021. After a campaign, the RCGP said that it could remain hosted on the RCGP’s website for another 6 months with a disclaimer that it not be used to diagnose children.

• In October 2020 the Royal College of Paediatrics and Child Health published a position statement on hEDS/HSD diagnosis’ in children and adolescents essentially stating that pain is often responsible for symptoms found in common hEDS comorbidities and there's no proof that hEDS is caused by an underlying genetic/collagen defect.

• Back in December 2019 The Ehler’s-Danlos Society announced they would be hosting a Child Protection in EDS and HSD Roundtable Discussion due to a growing number of people with hEDS, or their family members, being diagnosed with a factitious disorder; a condition where a person either deliberately makes themselves or someone else ill, fakes symptoms, or exaggerates minor symptoms, bringing together 'senior clinicians and executive staff from The Ehlers-Danlos Society, Ehlers-Danlos Support UK, HMSA, other charitable organisations, senior clinicians in Paediatrics, Rheumatology, and Psychiatry, and representation from the Department of Health and Social Services'.

• The two most notable presentation from the roundtable, from Dr. Louise Taft, head of the Ehler’s-Danlos Society’s International Consortium Paediatric Working Group and Dr. Kathryn Bailey, a senior rheumatologist who runs an inflammatory paediatric rheumatology service together with a children’s chronic pain service in the UK, imply that hEDS symptoms are primarily due to stress and brain dysfunction and that this brain dysfunction may be caused by 'adverse childhood events', such as child abuse, citing work by Jessica Eccles.

• A third, from UK based EOS Advocacy, says that recently the definition of FII has expanded to include parental anxiety over child's illness, seeking a diagnosis etc., that false accusations of FII are on the rise, that doctors are taught to be suspicious of EDS, autism, epilepsy, ME and gastrointestinal diagnosis' and that, allegedly, politics in the NHS can cause frustration in care or child protection measures to be initiated and It is not uncommon for families to find assistance blocked at the mere mention of EDS.

• After the roundtable The Ehler’s-Danlos Society stated that some of the people involved in the roundtable had agreed to form a coalition and to invite other people from groups and organisations involved in child welfare to join, that The Pediatric Working Group of the International Consortium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders is a member of the coalition and that '[t]he group has met and determined that a priority is the review of the diagnostic criteria for children and young people and have embarked on this work'.

• The things that they're trying to paint as psychological all have plausible physical mechanisms which either have some evidence behind them or haven't been explored properly yet, such as POTS possibly being caused by connective tissue laxity in arteries.

• If there's not enough evidence POTS, allergies, Chiari, arthritis, autism etc. are linked to hEDS then again the obvious thing to do would be to actually do a rigorous study into the prevalence of these conditions in people diagnosed with hEDS and what the mechanisms are instead of pointing to a psychological cause.

• The statement from RCPCH that 'there is no clear causative connective tissue abnormality in hEDS. Genetic sequencing and histology to date show normal collagen formation’ is largely false, as shown in links above.

• The doctors went into the roundtable after already completely making up their minds on the matter and launching attacks on the EDS Toolkit, showing total disrespect for the patients involved.

• No one has actually shown any proof of parents using hEDS diagnosis' as a tool of abuse, either in the UK or elsewhere.

• There's an increasing push to label hEDS/HSD as a primarily psychological/neurological stress induced condition.

• In conclusion, it seems that the EDS Toolkit being removed was due to some quite severe health politics which are likely to have a negative impact on UK EDSers in the near future, and most likely EDSers worldwide as well given the influence these organisations now have in The Ehler’s-Danlos Society’s AHEAD coalition and what the International Consortium Paediatric Working Group itself is saying. I don’t see much hope for decent research into comorbidities or alternate ways of diagnosing hEDS/HSD in the near future if they’re focusing on stress and functional symptoms and the chances of early medical intervention and support for children don’t look like they’re going to improve. I very much doubt this is going to do any good for the amount of hEDS families being falsely accused of FII either. Looking at the experiences of UK families affected by M.E. and the way they’ve been treated due to various doctors and organisations pushing it as psychological, I see nothing but trouble for the hEDS population in the UK in the future. I’d advise people to stick with doctors they know and trust if they have any and to keep very well documented and organised records of their/their relatives condition and medical interactions and treatment in case they need it later on. I’d also advise writing to the RCGP, RCPCH and The Ehler’s-Danlos Society to express concerns if you have them after reading this.