Changing Times For PwME

Wow, where do I start?

‘Team Foggy’ are back (on Monday) after having a 2 week break from social media, blogging, and podcasting. As I said in this blog, it all got a bit too much and I needed to step away for a bit. I knew I needed to ease back from everything and get a bit more settled for my own personal health and sanity!  It worked! I feel ‘better’ and able to cope with whatever the NICE guidance review chucks at our community in the coming week (and months). IT is coming…no point in pretending otherwise (I’m fully braced to see something pop its head up in the Sunday Times tomorrow…fingers crossed I’m wrong).

I haven’t been ‘on holiday’ or not working, I’ve been able to put more energy into other areas like Stripy Lightbulb CIC and my ongoing work with my local Council/Public Health teams in a  Long Covid Working Group. I’m not able to state publicly what is said within these meetings, however, I will say that sometimes UK criticism of support offerings is unfair due to staffing issues and budget constraints of councils and NHS trusts around the UK. In terms of ‘staffing issues’- Brexit (EU staff departures), staff ‘burnout’, and Long Covid in NHS staff, to name a few factors, and you have a staff shortage to contend with when dealing with this ‘new phenomenon’. Obviously, this will have a knock-on effect to our own ‘C.F.S’ clinics over time if our own patient numbers significantly escalate.

Today is Saturday 14th August 2021.

In 4 days time, M.E patients in the UK (ripple effects will be felt worldwide) could POTENTIALLY see progress being made in terms of GET/CBT being chucked in the bin by NICE and no longer being recommended as ‘treatments’ for our disease. I’m hopeful, but until I see the changes in black and white with my own eyes, I am being cautious. Be in no doubt, it will be the first step, a blooming big step, but just one step, towards change. It will be a mountainous challenge for our whole community to get these revised guidelines seen and accepted by the medical professionals we desperately need to see and accept them – GPs, Physios, OTs, Nurses, in particular.

I have been trying to be proactive instead of reactive to the guidelines review, I have been speaking to my PR connection about getting a piece into the UK national press BEFORE the 18th. Unfortunately, M.E fluctuation cycles scuppered our plans. The article will have raised the issue of how patients are affected by exercise and why this review is so important for our community. However, I have personally submitted two ‘articles’ from a patient perspective – I will wait and see if anything happens with them in the next couple of days.  As Foggy would say ‘paws crossed’.

I have managed to go on 3 25 minute dog walks with Maggie and Foggy’s chauffeur during the past fortnight. I only ever go ‘walkies’ when I feel well enough to do so. 3 times in a fortnight is much more often than during the previous 18 months so I am hopeful that I am ‘stabilising’ and have found my ‘new normal’. This was the hope when I stepped away a fortnight ago – my body seems to be much calmer when I am not reacting to all sorts of nonsense on social media.

I’ve had a lot more time to think and get my thoughts into a straight (ish) line. I’ve been thinking about how the language our community uses to talk about our disease has changed over the lifespan of the pandemic. Words and phrases that I have never heard before are frequently being used by patients relatively new to advocacy. I don’t feel the need to compete with Long Covid for attention. I am sticking to what I understand M.E to be. This new language had me doubting my own knowledge and expertise – not good when I am the founder of an online training company that teaches others about the disease! That brings me neatly onto the subject of P.E.S.E.

Post Exertional System Exacerbation (P.E.S.E) is what the Long Covid community are calling Post Exertional Malaise (P.E.M). It’s not an acronym I will be using in relation to M.E. I know the word ‘malaise’ is not liked by many in our community because it makes us sound like 18th century ‘ladies’ who are wilting, but this is the Cambridge Dictionary definition of ‘malaise’ –

a general feeling of being ill or having no energy, or an uncomfortable feeling, that something is wrong, especially with society, and that you cannot change the situation.

I agree, this definition does not adequately describe how we feel like we have been hit by a truck, been through 7 rounds with Anthony Joshua, or adequately sum up the range of issues that are incorporated within P.E.M, including: Facial palsy, tremors, palpitations, partial paralysis, slurred speech, pain, light and noise sensitivities, the list goes on and on. However, P.E.M is very difficult to pin down and individual patients have their own unique ‘flavour’ of P.E.M. I would argue that it cannot be described as purely symptom exacerbation as I have symptoms that I only experience during P.E.M. They aren’t ‘exacerbated’ – they are caused by over exertion.

Over recent months, I have seen many LC advocates and patients state they prefer using P.E.S.E over P.E.M. I have been struggling to understand why a rebrand of P.E.M is necessary for Long Covid. It’s not just me either, I have seen a number of medics asking if they are the same thing and, if not, what the differences are.  Is the change wanted to put some distance between Long Covid and M.E, or simply that patient advocates want to create a unique ‘identity’ with new phrases for a ‘new illness’? My issue with that is, for many, it is not a ‘new illness’. Many are receiving/have received diagnoses for illnesses that existed well before Covid19 including M.E/C.F.S, MCAS, Fibromyalgia, Small Fiber Neuropathy etc. Since last Summer, Long Covid patients have connected with M.E patients online due to the overlapping ‘symptom’ of P.E.M. They identified with the ‘key defining  characteristic of M.E’, so why is there a need for a rebrand? My concern is that, because our NICE guidance review is so heavily interlinked with P.E.M, over a much longer term, a rebranded name be seen as different to P.E.M, all research and evidence related to P.E.M will be ignored, and so patients with P.E.S.E will be seen as able to tolerate exercise. This may mean Long Covid patients have to start from scratch to fight for the same thing we have been fighting for for over a decade. I have asked Long Covid advocates for their reasoning behind the name change but I haven’t received any responses.

***UPDATE*** Since posting this blog yesterday, a few PwME have told me that P.E.S.E was included within the NICE draft guidelines. If I noticed that I have forgotten . I’ve only seen it used on social media for Long Covid or by PwME responding to Long Covid topics. We also have P.E.N.E, we really don’t need another name for the same thing. If P.E.S.E is included in the final published guidelines this week, maybe we need to ask where the term originated because it has emerged without debate. A name change for P.E.M is not insignificant in my opinion given that it is the ‘key defining characteristic’ of our disease.

UPDATE – Ryn’s flowerstall has now raised over £300 for M.E Foggy Dog and Cure M.E. Amazing work Ryn, thank you ….keep going! xxx  Foggy and I are unable to get back to ‘business as usual’ fundraising until the pandemic settles a bit. I have a grumpy Foggy on my hands at the moment!.

Foggy in happier times!

As you can tell, I’ve been as busy as a ‘mildly’ chronically sick M.E (and PASC) patient can be! I’ve enjoyed the past 2 weeks, I’ve had ‘me time’ and I’ve managed to catch up with old Foggy friends via email too. Please remember, even if you haven’t heard from me for a while, I am always available at the end of a  website contact form, or email. You aren’t ‘disturbing me’.

I’m looking forward to ‘logging back in’ on Monday and ‘chatting’ to PwME again. Foggy and I have missed you!



and Foggy OBVIOUSLY xxx

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