Video: Who Funds Research? | Why The Charity Sector is Vital For Long Covid & ME/CFS

The NHS website links to the ME Association website: https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

Honestly I hear this argument any time anyone has any suggestions: "Nothing can be done because ME is so discriminated against". It's incredibly defeatist, and results in nothing being done, but just pointing the finger elsewhere. It's a philosophy of failure.

 

My view is that there are already too many ME charities. Adding an additional one would just increase the problem.

Ideally a Long Covid charity would figure something out.

Alternatively it's about finding new trustees for the ME association - 4 out of 5 of their trustees are way over the 9-year trustee time limit, so the charity is in desperate need for a new trustee team.

 

Website SEO and Google ads is not my speciality, but, I see ads for all sorts of companies appearing when I search for stuff, so, what’s different with paying to appear in searches for ME terminology?

AfME appears in the top 4 when searching for ‘ME/CFS’, further down when searching for ‘CFS’. Search for ‘chronic fatigue syndrome symptoms’ and the MS Trust appears as the sponsored result. Buying their way up the search results would be a start methinks.

 

Developing the 'Search Engine Optimisation' problem:
(This is fundamental because google searching is how most people get information. If ME charities are high on the results, they will receive more clicks and will influence more opinions.)

We all know the reasons pwME prefer the term 'ME', but we also know that many doctors will use the term 'Chronic Fatigue' or 'Chronic Fatigue Syndrome'. So when someone goes home and googles their diagnosis, they are more likely to google 'chronic fatigue' or 'chronic fatigue syndrome'. Whatever our preferred disease name, ME charities need to be high on those google search results if we are to engage newly diagnosed people, and (also vital) their friends and families.

I share a screenshot of a UK google search for 'ME' and 'Chronic Fatigue Syndrome'. ME charities are in a good position if people google 'ME', but not if they google 'Chronic Fatigue Syndrome'.

Link: Google results for 'Chronic Fatigue Syndrome'

Link: Google results for 'ME'

Link: Google results for 'Chronic Fatigue'

Conclusions:
• First off, the UK google results for 'ME' are good: ME charities sit in second, 3rd, 4th place, this shows ME charities can get to a good position on search.
• However many people will be given a diagnosis of 'Chronic Fatigue' or 'Chronic Fatigue Syndrome'. For these terms, ME charities perform poorly.
• We should also aim for a high google search result for other terms: 'Brain Fog', 'Fatigue', and all sorts of others.
• I know there is a resistance to using these terms, but we have to "meet people where they are" - e.g. appear on their search terms, not expect them to know our preferred terminology.

 

This may be a slightly tangential issue, but it may have practical relevance.

I would strongly recommend anyone writing about ME/CFS, yes ME/CFS, explicitly uses the combined acronym and also follows it initially with myalgic encephalomyelitis/chronic fatigue syndrome.

If the objective is to raise funds for research I think it is worth recognising that the serious research community has now formed a consensus that the combined acronym represents a biomedical concept worthy of investigation. ME was always problematic. I know highly intelligent eminent researchers who cannot buy in to "ME is one separate disease". But they can buy into the clinical category of ME/CFS focused on PEM and see the logic of investigation.

If charities talk in terms of ME/CFS in body text that will pick up ME/CFS even if they are still called ME this or that. And if ME/CFS is introduced with the full words at first Google should pick it up, whether myalgic encephalomyelitis or chronic fatigue syndrome.

The rheumatology community gradually made the shift from 'Arthritis and Rheumatism Council' to Arthritis Research Campaign. Physical Medicine became Rheumatology. The actual words do not matter much but they can express a profound shift in attitudes. I think we want a shift to ME/CFS as a valid scientific and clinical concept to research. It isn't just a compromise between two terms. It indicates a level of insight into the complex problem in hand and a degree of pragmatism about trying to solve it.

 

Thank you Professor - that is a very useful insight.

For what it's worth: So long as the person I am speaking with respects the impact and reality of the disease for me, I am not too bothered about the name.

There is a GP who is running the Brighton Marathon for ME Research UK. In his fundraising blurb he refers to 'Chronic Fatigue' and the like, but his heart is very clearly in the right place so I am not bothered about it.

The issue with the Chronic Fatigue Syndrome name comes (predominantly) from its use by people who didn't recognise its impact. A degree of pragmatism here would help us communicate better, and be heard.

 

As far as I know SEO is in principle free: it refers to ways in which you can adjust your content and website to appear higher in search engine results. Often it starts with doing keyword analysis which means looking at which terms are used the most by users. In our example, CFS is probably used more often by new patients and relatives than ME/CFS or ME. Because charities tend to avoid this term they are ranked rather low for the searched that people actually use to find information about the disease.

SEO is basically using all sorts of tricks to tell the Google machine learning algorithm that you your webpage is a good answer to the relevant query the user has typed in. Backlinks (other websites pointing to yours) are also a big part of this because Google uses this to rank websites.

In addition to that you can also pay Google to appear at the top in search results as an add that looks not much different from the organic search results. [EDIT: but this would require continuous payment to stay at the top].

 

For me, the name CFS itself is really problematic and a big deal but there does not seem to be a good solution for it.

ME has its own problems, especially for getting recognition in the medical and research field and trying to introduce a new name like SEID does not seem realistic either. As Jonathan said, using ME/CFS and spelling out the full names is probably the best way to move forward.

 

Exactly this - we need to ensure we engage people experiencing this disease (and arguably even more importantly - their families) but who aren't fully versed on the politics and nomenclature.

 

Definitely, we have 5 or so in the Netherlands and it's a pain to find out who to align with and who to donate to. If they even actively search for donations.

Was searching a bit for organizations to donate to but there are so many of them that bring in tiny bits of donations... Could make a pretty substantial list and it probably wouldn't even cover half of them. Then the pool of experts on marketing, organization etc. gets diluted too over the various organizations.

I've just been donating 20 euro's monthly to the OMF myself and with my birthday coming up in a month I thought I'd use that opportunity to get people to donate on my behalf. There's a dozen very interesting projects, but I'm just gonna have them make it out to the OMF because navigating through all the different charities is a bit of a nightmare.

Would actually prefer to send it to PolyBio, but don't have a credit card. Seeing how paypal donates 2 euro's every time I donate, it might actually be easier to get a credit card.