UK Ovelapping Illness Alliance

[Chandelier]

Overlapping Illness Alliance

Join the Overlapping Illness Alliance for effective advocacy and support for those with overlapping health conditions.

www.overlappingillnessalliance.org.uk

The Overlapping Illness Alliance (OIA) is a coalition of charities working to improve recognition, care and support for people of all ages living with complex, overlapping conditions.

We are an alliance of charities representing people with Myalgic Encephalomyelitis (ME), Long Covid, Ehlers-Danlos Syndrome (EDS)and Hypermobility Spectrum Disorder, Postural Orthostatic Tachycardia Syndrome (PoTS) and Mast Cell Activation Syndrome (MCAS).

These illnesses often present similar, debilitating symptoms including fatigue, pain, dizziness, brain fog, gut issues and post-exertional malaise. Despite their frequent co-occurrence and shared biological mechanisms, they are still too often treated in isolation, leading to fragmented care and delayed diagnoses.

These conditions are often overlooked and misunderstood. They are frequently underdiagnosed and poorly treated, leaving people feeling stigmatised or invisible in the healthcare system.

Together, we can transform neglect into recognition. We can turn isolation into inclusion.

Let’s build a fairer future where these conditions are recognised, respected, and properly treated.

 

[Jonathan Edwards]

Except that these diseases only seem to overlap in the minds of fringe physicians.
They say nothing about who they are or who has joined up.
I do wish this bandwagon would grind to a halt.
As I mentioned in an email to MERUK today, the constant repetition of this MCAS,EDS,POTS, mantra is a major reason why people with ME/CFS are banned from medical clinics now. The doctors just got fed up with it all.

 

[Chandelier]

Long Covid Disregarded in UK Workforce Strategy, Jeopardizing Public Health and Economic Stability

On Wednesday 5 November, 2025, the UK government's Keep Britain Working review, led by Sir Charlie Mayfield, was met with criticism for failing to address the ongoing impact of Long Covid and the need…

www.businessmole.com

AI Summary:

The UK government’s 2025 Keep Britain Working review, led by Sir Charlie Mayfield, has been criticized for failing to acknowledge Long Covid and its impact on workforce health. Long Covid Advocacy condemned the report for overlooking pandemic-related illness as a key factor behind the rise of 800,000 people out of work since 2019.

Experts and data from the Office for National Statistics and The Lancet highlight that Long Covid severely affects working-age individuals, leading to long-term sickness and economic inactivity. Critics argue that ignoring infection control and workplace air quality undermines both public health and productivity.

Long Covid Advocacy urges the government to recognize Long Covid in workforce planning, introduce flexible work pathways, improve ventilation standards, and track post-infection impacts. The group warns that without evidence-based policies and protection measures, the UK’s workforce and economy remain at serious risk. (149 words)

 

[rvallee]

As I mentioned in an email to MERUK today, the constant repetition of this MCAS,EDS,POTS, mantra is a major reason why people with ME/CFS are banned from medical clinics now. The doctors just got fed up with it all.

Sounds very illegal. Also not that I believe in this stuff, but the kind of stuff that many religions reserve a special place for. Geez, there are entire legal doctrines around this kind of collective punishment.

Although they do overlap in two ways: they are similarly discriminated, thus creating the conditions for solidarity among the patients, we certainly don't appreciate seeing others being thrown in the trash on an industrial scale, but the dominant psychosomatic models and their thought leaders certainly aren't shy about saying exactly that, just with their ridiculous models.

Somehow it's fine for them to say those things. Despite having worse reasons for it. But it's a popular opinion, and, funny how that works, so it's widely accepted.

 

[Nightsong]

The Overlapping Illness Alliance (OIA)

Surprised to learn that AfME & ForwardME have signed up to this. It's a terrible idea.

We are so very badly served by the organisations that claim to represent us.

 

[Dx Revision Watch]

I'm not a fan of "overlapping symptom" collaborations and I remain concerned that "PEM" is going to end up meaning anything anyone wants it to mean - especially if CDC/NCHS do eventually approve the request for adding a symptom code for PEM to the US's ICD-10-CM Symptoms and signs chapter.


The https://www.overlappingillnessalliance.org.uk website says:

Joining the Alliance​

"We've launched as a small founding group to turn collaboration and planning into meaningful action, creating one voice for the joined-up progress our communities need.​

​

This is just the beginning. The Alliance will grow over time, and we look forward to welcoming more organisations who share our aims.​

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Applications for new members will open in 2026 and we will share more information on this process soon.​

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For now, please register your interest by completing the form below and we will get back to you once applications open.​

​

​

But unhelpfully, doesn't appear to provide a list of founding members.

However, the notice on Twitter/X does list these groups as comprising the coalition:

https://x.com/ehlersdanlosuk/status/1985700100115509475

Ehlers-Danlos Support UK
@ehlersdanlosuk

MastCellAction
@MastCellAction

PoTS UK
@UKPoTS

Long Covid Kids
@LongCovidKids

Long Covid Support UK
@Long_Covid

Action for ME
@ActionforME


The Twitter/X posts thread says:

"Today we are proud to launch the Overlapping Illness Alliance (OIA), a coalition of charities working to improve recognition, care and support for those living with complex, overlapping conditions. 1/5​

​

We are an alliance of charities representing people with #EhlersDanlossyndromes (#EDS), #hypermobilityspectrumdisorders (#HSD), #PoTS, #MCAS, #longCOVID and #MECFS: https://overlappingillnessalliance.org.uk 2/5​

​

These illnesses often present similar, debilitating symptoms including fatigue, pain, dizziness, brain fog, gut issues and post-exertional malaise. They are still too often treated in isolation, leading to fragmented care and delayed diagnoses. 3/5​

​

We are hosting a drop-in session at the Houses of Parliament on Tuesday, 25th November to inform MPs about these conditions, and what they can do to support. Ask your MP to attend using our simple form: https://actionforme.eaction.org.uk/dropin 4/5​

​

You can also learn more about the alliance, which includes:​

@ehlersdanlosuk, @MastCellAction, @UKPoTS, @LongCovidKids, @Long_Covid, @ActionforME, here: https://overlappingillnessalliance.org.uk 5/5"​

 

[Dx Revision Watch]

Surprised to learn that AfME & ForwardME have signed up to this. It's a terrible idea.

We are so very badly served by the organisations that claim to represent us.

I'm not surprised.

 

[Trish]

Why just those categories, how about adding IBS, FM, migraine, eczema, asthma, type 2 diabetes, FND, MUS, PPS, BDS, MUPS, idiopathic chronic fatigue, anxiety, depression, decondioning, FII, .... then slap a functional label on us all and prescribe CBT. Job done.

I agree it's a bad idea. We need ME/CFS to be recognised, diagnosed accurately with of PEM not just fatigue, and researched as a separate condition.

It's been quite confusing seeing the gradual inclusion on very shaky or no evidence, of MCAS, POTS and hEDS as though they are clearly definable causative pathways to ME/CFS.

 

[Dx Revision Watch]

Jen Brea was trying to whip up interest a few years ago for a multi diagnosis/symptoms coalition group for "giraffes", "zebras" and a Noah's ark of conditions.

 

[Cinders66]

I think grouping together for *some* advocacy makes sense and have often wondered why our supposedly collaborative charities haven’t teamed up more with female predominant, psychologised and neglected fatiguing chronic condition organisations to make noise about injustice and the Costs of neglect to both sufferers and the Economy.
Investment is needed.

ME/CFS, FM, EDS, POTS & LC probably account for 1.5m out of the 3m off sick work.
They disable, have naf “it’s up to you what you provide ICBs” NHS services, poor or non existent treatment options & cost many £bs/year but the medical establishment & gvt leave them sidelined on low research funds
Apparently the “workless young” are a massive problem with ballooning costs & it’s headlining the news. Yet the investment in research in “our conditions” compared with “more respected” differently disabling conditions is small.

However, out of that list ,ME is the most disabling, with a shocking underworld of harm & suffering, and are, because of total failure to respond to that, the most underserved. We saw in the Chronic Fatigue syndrome umbrella how severe ME in particular was the least served as the debate became all about exercise for fatigue. If this coalition becomes the dominant advocacy movement , severe ME could once again be lost in an “energy limiting conditions” framing where prevention of decline and a slow build up in care & research from 2025, vs urgent action for the 30 year scandal & suffering of ME harm, becomes the focus.
On the positive, long covid orgs Are more dynamic/radical, so with closer working, they might compel orgs like Action for ME (that won’t even petition) to see it is “ok“ to take a more campaigning role.