Friday 12 May 2023

Pink Triangles, Blue Triangles

Pink Triangles, Blue Triangles

May is #InternationalMEAwarenessMonth &/or #MEAwarenessMonth.

The 12th May is #InternationalMEAwarenessDay &/or #MEAwarenessDay to co-incide with Florence Nightingale’s birthday, as she is suspected of being a person with Myalgic Encephalomyelitis (pwME) or its closely-related sister disease Fibromyalgia (thus pwFM). Like about half of pwME I am diagnosed with both conditions. I usually try to compose a new blog-post to mark the occasion, but having severe M.E. means I do not always achieve my objective.

Image description: pale-blue triangle on a black background; above the words “MYALGIC ENCEPHALOMYELITIS”; below the phrase, “SILENCE = LIVING DEATH”.

In case anyone is pondering where they may have seen something similar, I take you back to 1987 and the “Silence = Death Project” (link to Wikipedia article here). In that instance a pink triangle was utilised.

I quote from the cited link, as I do not have the energy nor cognitive abilities to reword it:

“A pink triangle has been a symbol for the LGBT community, initially intended as a badge of shame, but later reclaimed as a positive symbol of self-identity and love for queerness. In Nazi Germany in the 1930s and 1940s, it began as one of the Nazi concentration camp badges, distinguishing those imprisoned because they had been identified by authorities as gay [and bisexual men per] men. In the 1970s, it was revived as a symbol of protest against homophobia and transphobia, and has since been adopted by the larger LGBT community as a popular symbol of LGBT pride and the LGBT movements and queer liberation movements.”

It is estimated that 25% of pwME are either housebound or bedridden, but all sufferers are imprisoned in a severely failing body, for which there is no cure, no treatment, no (current) hope.

The reader may be wondering why I am labouring comparisons with queer men. Well, obviously I myself am a queer man as well as a pwME, so I personally am interested in what can be learned from my brethren. And there is something to learn; something I have tweeted about over several years, but have finally decided to blog about. I point out here that none of the charities to whom I have tweeted or included in a tweet have ever responded to me, on any issue.

I do not know how many folk will recall the rabid era of HIV & AIDS hysteria in the 1980s. Many pwME will have been born long after its passing. However, one thing still strikes me from that period - how the gay community took pro-active action to support their brethren in need, those suffering not only from an incurable illness, but actively hated and shunned by society at large, health services, local communities and most shockingly by their so-called friends & families. Sounds familiar to many of those with M.E. or Fibromyalgia.

I cannot find much on the “buddy system” that the LGBT communities creäted back in the early/mid-1980s. (Here is a link to the basic working of any buddy system, via Wikipedia.)

However, a seminal film was made in 1985 simply entitled “Buddies” (dir. Arthur J. Bressan Jnr.). (Link on Wikipedia; link on imdb.)

I quote from Red-125’s comment in the review section of the latter:

“The buddy concept was new to me. Humanitarian groups would assign people to visit people dying from HIV/AIDS if they had no other support system. This must have been common, because many gay men had partners who were dying or had died, and people were afraid to go near people with HIV/AIDS because no one knew how it was transmitted.”

As far as I can recall, I have not seen this film. However, I did see a film made the following year, 1986, entitled “Parting Glances” (dir. Bill Sherwood) in which Steve Buscemi plays Nick, the guy dying from AIDS. (Link on imdb; link on wikipedia.)

The above link is to a short snippet from the film where the buddy, Mike, is talking to Nick. We can see the remains of a health-drink Mike concocted a few scenes earlier. We are apprised of the meal that Mike has prepared. And we hear of and see Mike entertaining Nick. What we do not see in this scene is Mike advocating on Nick’s behalf.

So, in case it has not yet become apparent to the reader - my fault no doubt - I am suggesting that pwME need a buddy system along the lines that queer communities established at the height of the AIDS furore: whether for social visits and general support for those with mild ME (that is a loss of 25% of previous function) to preparing, serving & sometimes feeding and strong advocacy support for those with severe ME.

ALL of the big M.E. charities have seriously let down pwME: as far as I can tell (having searched their websites as best I could and checked via search-engine too), not one has instigated a buddy system. However, ideally, they ought to all work together to develop a national one-stop system, where those in need and those who wish to volunteer can be brought together. Of course, there are financial implications: set-up & maintenance of a dedicated website; payment (if a volunteer cannot be found) to oversee the running of the buddy system; training costs - although remote training via video could reduce costs considerably; police-checks to ensure the suitability of volunteers; etc.

Having one centralised buddy system could also be a source of identifying specific issues effecting pwME and how widespread such issues may be. As an example, if volunteers regularly update the site with issues for which they have to advocate, such a buddy system might give us a better picture of how the NHS, local social-services, G.P.s, Pharmacies, supermarkets, etc. deal with pwME. This in turn would feed back to the charities and apprise them of real need.

Another advantage of a one-point contact for support-services for pwME is that it would more likely be used by G.P.s, hospitals and social-services, especially if publicised to them, to direct sufferers/patients/clients to sources of assistance. However, at least in respect to medics, there is nevertheless a large amount of scepticism amongst them towards the UK M.E. charities that needs to be addressed. Perhaps seeing the charities work together to establish a buddy system might alter or improve medical opinion.

This scepticism is shared by many pwME due to the nature and structure of the charities. They are not DPOs, that is Disabled Peoples Organisations, bodies whose constitution requires that both their membership and their board must consist of a majority of disabled folk. 

I have been diagnosed with ME/CFS since 1998 and previously with post-viral fatigue syndrome (PVFS). How many pwME might still be alive if they had but had a buddy, an advocate, a help-meet, a support? To my knowledge the leading UK charities have taken no action to creäte a much needed & long-overdue buddy system. Yes they have telephone and email routes via which one might be able to access limited help & support. But if there is a buddy system, it is very much hidden.

How much longer will these charities, ostensibly speaking on behalf of pwME, need before they take pro-active & pragmatic action? The queer communities set up buddy systems in a matter of months. What is holding back the M.E. Charities?


The big three charities and a quotation from each one follow.

Action for ME since 1987 (and the link to their website ):

“We are here for people living with M.E.

We're working to ensure adults, children, young people and families living with the illness are supported during this unprecedented time, and beyond. Get connected to Action for M.E. services, support and resources by phone, email and online, including peer-support and services local to you.”

The M.E. Association since 1976 (and the link to their website ):

“The ME Association is here to support people through all stages of their illness because we desperately want to see everyone get the help they need and, through research, help to develop an effective treatment and one day even a cure.”

Forward-ME since 2008 (& the link to their website ):

“We exist to present one voice to anyone keen to know more about Myalgic Encephalomyelitis known as ME, sometimes referred to as Chronic Fatigue Syndrome or CFS, representing a number of UK charities and organisations in an alliance that together unites us in a common cause to ease the suffering of patients, and in time, find a cure.”

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