ME Association: iterations of objectives between 2021 and 2023

[Dx Revision Watch]

Wasn't sure where to put this but I wanted to note the following:

It's not known whether or when the ME Association plans to update its Articles of Association to reflect a change in its objectives:

https://meassociation.org.uk/wp-content/uploads/Articles-of-Association-of-Myalgic-Encephalopathy-Association.pdf

Articles of Association

Extract Page 3:

Objects of company

3. The objects of the company are:-

(a) to offer relief to persons of all ages with Myalgic Encephalopathy (ME)/Chronic Fatigue Syndrome (CFS) through the provision of information and

(b) to further education in all aspects of the illness and

(c) to support research into the illness including the making of grants and to publish the useful results of that research
​

From the MEA's landing page, via WayBack Machine:

Iterations of landing page intro text between January 01, 2021 and January 18, 2023.

Long Covid was added in July 2021:

Note the MEA now lists PVFS first on its landing page, whereas, historically, the MEA has listed ME/CFS first and then (the ill-defined) term, PVFS.

Are there operationalised criteria for PVFS?
How do clinicians differentiate between PVFS and ME/CFS?
What is the MEA's rationale for now listing PVFS first?


Edited to change order of text for better clarity.

 

[CRG]

I wouldn't take the statement on the front page of the website as requiring a defintional change in the Charity's objectives. As long as the activity undertaken is subservient to the achievement of the stated objectives then the Charity is acting within its legal remit. The directors have discretion when it comes to how the Charity operates:

Directors’ general authority
6. Subject to the articles, the directors are responsible for the management of the company’s business, for which purpose they may exercise all the powers of the company.

On a personal note I think it would be darkly amusing if after almost 40 years of membership someone were to obeject to my being 'helped' by the Charity because my near 40 year old diagnosis was "PVS type syndrome" and not ME/CFS.

 

[Dx Revision Watch]

I would have asked Tony Britton (currently back working for the MEA part-time) if he knows why the MEA now lists PVFS first on its list of persons it helps, but he inexplicably deleted his account, this morning.

Tony Britton
@TheWestonMale
After working for UK charity
@MEAssociation
for 21 years, now p/t with them until end of 2023. Ex-journo and news editor still enjoying a bit of a scribble.

 

[Dx Revision Watch]

I wouldn't take the statement on the front page of the website as requiring a defintional change in the Charity's objectives. As long as the activity undertaken is subservient to the achievement of the stated objectives then the Charity is acting within its legal remit. The directors have discretion when it comes to how the Charity operates:

Directors’ general authority
6. Subject to the articles, the directors are responsible for the management of the company’s business, for which purpose they may exercise all the powers of the company.

On a personal note I think it would be darkly amusing if after almost 40 years of membership someone were to obeject to my being 'helped' by the Charity because my near 40 year old diagnosis was "PVS type syndrome" and not ME/CFS.

It's the addition of "Long Covid" that I was thinking of in the context of whether the MEA intends to update its Articles of Association - not "PVFS". The term "PVFS" has been associated with the MEA's work for years.

Long Covid is a recent (July 2021) addition.

I've changed the order of the text in my initial post for better clarity.


But I would also like to know why the ill-defined term, "PVFS", has now been placed at the front of the list on the landing page.

 

[Dx Revision Watch]

On a personal note I think it would be darkly amusing if after almost 40 years of membership someone were to obeject to my being 'helped' by the Charity because my near 40 year old diagnosis was "PVS type syndrome" and not ME/CFS.

My son was initially diagnosed 24 years ago, aged 13, with "Postviral fatigue syndrome" which was subsequently changed to "ME/CFS". As I've said upthread, it's not the addition of PVFS to the MEA's Objects of Company I am talking about - but the addition of Long Covid.

 

[Ash]

It's the addition of "Long Covid" that I was thinking of in the context of whether the MEA intends to update its Articles of Association - not "PVFS". The term "PVFS" has been associated with the MEA's work for years.

Long Covid is a recent (July 2021) addition.

I've changed the order of the text in my initial post for better clarity.


But I would also like to know why "PVFS" has now been placed at the front of the list on the landing page.

I’m guessing it’s because they want to win at the algorithm. They’ve realised that the majority of people who have become unwell via infection post arrival of COVID pandemic will be more likely to associate with that as a primary diagnosis even where LC patients meet the ME criteria, including PEM. It makes financial sense for MEA to capture this cohort. For people with LC and PV it’s probably advantageous to find and listen to MEA over other many other organisations, on not buying into false promises of cure and on not risking deterioration through rehabilitation programmes that demand more cognitive or physical capacity than they might currently have.

However where this leaves people with ME, potentially relegated yet again, I am not sure. To speculate, maybe if they do get an increase in revenue MEA will finally be able to make some significant lasting progress for people with ME as a whole, but if they maintain the same extremely circumspect and cautious approach they’re known for my guess is probably not.

 

[Trish]

I think the addition of Long Covid is a recognition of reality.

First because the MEA, especially through documents written by Charles Shepherd, has been very supportive of people with Long Covid from early on, which many have found helpful and which I applaud.

And second because many people fit the current criteria for ME/CFS but are diagnosed with Long Covid or it's various other names. It's good to offer them support whichever designation they and their clinicians choose.

 

[Dx Revision Watch]

I think the addition of Long Covid is a recognition of reality.

First because the MEA, especially through documents written by Charles Shepherd, has been very supportive of people with Long Covid from early on, which many have found helpful and which I applaud.

And second because many people fit the current criteria for ME/CFS but are diagnosed with Long Covid or it's various other names. It's good to offer them support whichever designation they and their clinicians choose.

To be clear:

I am not questioning the addition of Long Covid to the list of patient groups for which the MEA provides assistance and support.

What I am querying is whether and when the MEA will add persons with Long Covid to its Articles of Association "Objects of Company" and also why it now puts "PVFS" at the front of the list of people it helps.

That is, will the MEA be changing:

(a) to offer relief to persons of all ages with Myalgic Encephalopathy (ME)/Chronic Fatigue Syndrome (CFS) through the provision of information and

to

(a) to offer relief to persons of all ages with Myalgic Encephalopathy (ME)/Chronic Fatigue Syndrome (CFS) and Long Covid through the provision of information and

-----------

And why does it not say:

"We help people with ME/CFS, PVFS and Long Covid"

rather than what it has said since January 2023, which is:

"We help people with PVFS, ME/CFS and Long Covid"

It is, after all, the ME Association.

 

[bobbler]

I think the addition of Long Covid is a recognition of reality.

First because the MEA, especially through documents written by Charles Shepherd, has been very supportive of people with Long Covid from early on, which many have found helpful and which I applaud.

And second because many people fit the current criteria for ME/CFS but are diagnosed with Long Covid or it's various other names. It's good to offer them support whichever designation they and their clinicians choose.

Geez it's specific I guess when it comes to articles of company but also complicated because of the rather ambiguous umbrella of LC including those who have the ME/CFS type, and perhaps indeed other 'forms' but also those who mightn't have the 'ME/CFS type/types'. And agree that because those who had/have ME/CFS and then get covid are probably more likely to get a relapse either in their ME/CFS or are adding in LC, but who knows which is which and that might be individual...

SO they have certain 'support' to offer, but I don't know if that is extending the knowledge and expertise that they do have from the many years working with the post-viral and ME/CFS end of things, but for those who primarily have e.g. breathing issues but no exhaustion or muscle issues or PEM and so on then I don't know the intention of the MEA and whether that would mean a whole new arm of allegiances and specialists etc. and potential for treading on toes.

So I guess there are some specifics for them to tease out with the 'we help' or 'we support'. I doubt they are metaphorically turning anyone down, but their body of information will be greatly helpful to certain issues vs others. You'd hope the statement about all ME/CFS and all ages there is correct and expansive, and for those who have similar issues that have come from LC the similar is extended but I don't know whether you'd be wary of the bucket of other things that currently the flimsy/expansive definition of what is covered by the term long covid means a claim to help 'all' raises tricky questions.

 

[Trish]

Given that the MEA does not provide medical care for individuals, and their materials about Long Covid make it clear that LC covers a range of symptoms that are not the same as ME, such as lung damage, I can't see that there's a problem with adding LC to their list of conditions the MEA provides information about. They don't claim all the after effects of Covid are the same as ME.

 

[CRG]

Unless the articles of association specify limits, the Trustees of a Charity (the Board) are free to interpret the meaning of the words defining the Charity's Objects, in reasonably broad terms. In the case of the MEA, if in the view of its Board adding Long Covid to the 'offer' the Charity makes at its public face (website, leaflets etc) furthers meeting the Charitable Objects then there's no logical basis that the wording of the Objects has to be changed. The Board would be making a tactical decision to meet its strategic ambitions (the Objects).

In the past it was characteristic of Charites, particularly those concerned with the relief of poverty to make very specific limitations, things like "for the care of the indigent of the Parish of South Watteridge" or "to afford comfort to the impoverished single daughters of Anglican clergy" but modern practice has for a whole set of reasons moved away from such limited briefs. An informal way to judge if a Registered Charity is acting appropriately is to ask a) is the Charity operating in the public interest ? b) is it operating within its stated aspect of Charitable purpose c) are its finances in order and its Board properly constituted ? If yes to all those there's a good chance the Charity is meeting its formal Objectives in a way that would commonly be understood as being acceptable.

Whether the MEA adding Long Covid to its public 'offer' is tactically sound is a different question and while I'm sceptical about it, I can imagine a range of reasons why the decision may have been arrived at and I don't think that decision is perverse or in anyway offensive to the MEA's broad purpose. Trustees have discretion and sometimes they will take decisions that are not universally approved of.

 

[Hutan]

Whether the MEA adding Long Covid to its public 'offer' is tactically sound is a different question and while I'm sceptical about it, I can imagine a range of reasons why the decision may have been arrived at and I don't think that decision is perverse or in anyway offensive to the MEA's broad purpose.

I'm curious why you are sceptical about the inclusion of Long Covid in the scope of an ME/CFS charity.

For me, including it is warranted on both moral and self-preservation grounds. If Long Covid is excluded, then it's hard to see how an ME/CFS charity could survive in the medium term, as most people developing ME/CFS after the SARS-CoV-2 pandemic began are likely to be diagnosed with Long Covid (or variations of that, PASC etc).

 

[Ash]

I'm curious why you are sceptical about the inclusion of Long Covid in the scope of an ME/CFS charity.

For me, including it is warranted for on both moral and self-preservation grounds. If Long Covid is excluded, then it's hard to see how an ME/CFS charity could survive in the medium term, as most people developing ME/CFS after the SARS-CoV-2 pandemic began are likely to be diagnosed with Long Covid (or variations of that, PASC etc).

For me personally as a person with ME & LC which I don’t feel to be the same thing, as in I do not feel like I have ME but more severely than before, I feel like I have LC as an addition. So I’m pretty keen on maintaining some separation in research etc. In social care it’s all the same.

But I’d prefer a more militant charity (contradiction in terms I know) to pop up and compliment the ME ones. Least the same old advocacy mistakes are just rolled out to a wider group of us.

Also algorithms not with standing, is it not a little insulting to your members and patrons of decades to just slide them down the billing of the charity named for their disease, without putting out a press release re this?

 

[Dolphin]

I'm curious why you are sceptical about the inclusion of Long Covid in the scope of an ME/CFS charity.

For me, including it is warranted for on both moral and self-preservation grounds. If Long Covid is excluded, then it's hard to see how an ME/CFS charity could survive in the medium term, as most people developing ME/CFS after the SARS-CoV-2 pandemic began are likely to be diagnosed with Long Covid (or variations of that, PASC etc).

Yes, this point came up on Twitter yesterday:

https://twitter.com/user/status/1702716434412085448

 

[CRG]

I'm curious why you are sceptical about the inclusion of Long Covid in the scope of an ME/CFS charity.

For me, including it is warranted on both moral and self-preservation grounds. If Long Covid is excluded, then it's hard to see how an ME/CFS charity could survive in the medium term, as most people developing ME/CFS after the SARS-CoV-2 pandemic began are likely to be diagnosed with Long Covid (or variations of that, PASC etc).

My concerns are complex - but that's part of a wider problem with many issues around ME/CFS where simplifications consistently disguise many of the logical problems that affect understanding of what ME/CFS may or may not be. The best simpliification I can give re: the MEA position is that I'd be more comfortable with the formula - "We help people with who have PVFS and ME/CFS and also those who have ME/CFS type symptoms following Covid 19 infection".

As an attempt at more thorough assessment I've resorted to the idea of sets (not formal) just as a way of describing where I think there are major logical gaps in the thinking about what ME/CFS is or is not. I've kept it to four propositions, though many more are likely feasible:


(1) ME/CFS as a distinct disease, or group of diseases which share (unique to the group) pathobiological features and a common symptomology.

on which basis ME/CFS is a ‘set’ which can contain other sets but only where those sets represent diseases that have in common, unique pathobiological features and a common symptomology.

And where ME/CFS as a set can itself be contained only by a set of ‘all diseases’.


(2) ME/CFS as a post viral condition or spectrum of conditions all of which are consequential on prior viral infection and a common symptomology.

on which basis ME/CFS is a ‘set’ which can contain other sets but only where those sets have in common, related pathobiological responses to viral infection and a common symptomology.

And where ME/CFS as a set can itself be contained by a set of ‘all diseases’ and intermediate to that a set containing all infections, and further intermediate to that a set containing all post viral infections.


(3) ME/CFS as a post infection condition or spectrum of conditions all of which are consequential on prior infection of any type and a common symptomology.

on which basis ME/CFS is a ‘set’ which can contain other sets but only where those sets have in common, related pathobiological responses to all forms of infection and a common symptomology.

And where ME/CFS as a set can itself be contained by a set of ‘all diseases’ and intermediate to that a set containing all infections.


(4) Long Covid (as per WHO) as a post viral condition which is consequential on prior viral infection by a single infectious agent but where multiple symptomologies may be present.

on which basis Long Covid as a set can contain no other sets, excepting those that are subdivisions of multiple symptomologies.

And where Long Covid as a set can itself be contained by a set of ‘all diseases’ and intermediate to that a set containing all infections, and intermediate to that a set containing all post viral infections.

Proposition (1) allows that ME/CFS is a distinct disease, separate from any precursor, initiator or other agent exogenous to the affected person. Research, treatment and cure(!) would be conceptually and practically independent of any other disease model.

Proposition (2) limits ME/CFS to being one of many potential conditions that follow ONLY a viral infection, that is viral infection is essential to the pathobiology and absent prior viral infection a person could not be said to have ME/CFS.

Proposition (3) limits ME/CFS to being one of many potential conditions that follow ONLY an infection, that is infection by an agent viral, bacterial, arthropodal etc is essential to the pathobiology and absent prior infection a person could not be said to have ME/CFS.

Proposition (4) is the current melange of multiple symptoms that are ascribe to post Covid 19 infection. It has no complete commonality with any of ME/CFS propositions. Its closest fit is Proposition (2) but the full list of Long Covid symptoms, and the published assessments of how those symptoms are grouped by case are at huge variance with the symptomology of ME/CFS. It is true that some cases fit but many do not. This is highly problematic where, for example a case of LC has no symptom of exercise intolerance and the usual advice regarding activity in ME/CFS would be inappropriate. A debate broadly settled around exercise in ME/CFS would need to be reopened if there were a simple equivalence made between LC and ME/CFS.


My view is that the paradigm of ME/CFS as certainly post infective needs to be resisted, we know far too little about the global patient population and we have no sound biopathology - defining ME/CFS as unequivocally a post infective, and specifically a post viral infective, condition risks excluding vital research directions. For the present the logical position must be that ME/CFS is not Long Covid, and while some people may receive an ME/CFS diagnosis following a Covid 19 infection, conflating the two is neither scientifically nor advocationally helpful.

Just a couple of points on numbers, using UK figures.

We have no sound numbers on incidence, recovery or mortality In ME/CFS but an incidence of 10,000 new cases a year pre Covid is probably not unreasonable. It might be that the 30,000 or so new cases of ME/CFS that have occurred since the start of the epidemic could all have been swept up in a catchall LC diagnosis but given that the MEA has a membership of less than 10% of the lower end of the UK PwME estimates, is it a viable strategy to reach out to a 2 million LC population the vast majority of whom do not have ME/CFS, whether of post viral cause or not ?

As to the medium term, the last UK figures (Feb 23) were suggestive of the reporting of PASC being relatively flat, implying that overall those who were going to experience PASC were already reporting those symptoms. I know that there is some data on people only experiencing PASC after multiple COVID infections but there is no large scale data around that and it's not unreasonable to suggest that Covid 19 is largely a one hit problem and that all those who are going to experience PASC have already done so, and that given wide scale first exposure and immunisation, then over time PASC is going to reduce to background levels that will be indistinguishable from a long term uprate in ME/CFS diagnosis.

 

[Sean]

My view is that the paradigm of ME/CFS as certainly post infective needs to be resisted, we know far too little about the global patient population and we have no sound biopathology - defining ME/CFS as unequivocally a post infective, and specifically a post viral infective, condition risks excluding vital research directions.

I agree.

For many, maybe the substantial majority, of ME patients there is probably an infective trigger, and probably a viral one. But I see no evidence at this stage that this is a necessary and defining component of the onset process, nor of the chronicity of ME.

It might be, and we are just not able yet to measure that properly, particularly considering that there may often be a slow development or prodromal phase, with a significant time delay between initial onset of the disease process and a clinical level of symptom expression.

But at this point the evidence isn't there either way.