Awareness Reach

Hi,

Insomnia has hit again and, although I hit the wall yesterday, I feel 'normal' and am getting on with stuff. I'm sure it will hit FULL FORCE later today though.

I am wondering how much of an impact all of my, and many others, attempts at awareness raising is making on a grassroots level. Over the past month or so, I have becoming increasingly aware of the blank expressions of supermarket staff when I make random M.E chitchat, of the fact that my neighbours have still not taken an interest in Foggy or M.E, and that I regularly see the bemused expressions of people I am delivering M.E presentations to.

Sometimes I feel like I have a split personality, I am Foggy's P.A online and known by many around the globe for my M.E work. In my 'real life', no one has a clue what I do as a 'hobby' (ha!) and I regularly find myself explaining what I do to new acquaintances and they don't really understand it. I think they think I'm just a crazy lady with a teddy...well...maybe they've got it partly right! 

The M.E community is in such a social media bubble, I am wondering if we are struggling to connect with people in the 'real world'. Not everyone is on social media. That is why I try to reach a wider range of people by arranging talks, and by being in newspapers, and on the radio/TV. When I am face-to-face in conversation with non-sufferers, I don't feel we have made much progress with

getting them to understand that M.E is not only a seriously debilitating illness but running alongside is a complex political movement. The other stuff that comes with the illness makes our illness unique. It isn't just another chronic illness that can be dealt with by 'mind over matter'. Recently, someone said to me that she didn't like the term 'sufferer' and I should simply say 'person living with M.E'. They felt that people with other chronic illnesses dealt with their illness and got on with life. I had brain fog so didn't waste my energy replying. But, here goes, I use the term sufferer because that's what we do...we suffer. If we aren't suffering then why on earth are we putting in so much effort to make people see how bad our illness is? I dislike the terms warrior/fighter purely because, I don't know about you, I'm finding that battling against the illness is a fruitless task. Saying 'person living with M.E' makes it sound like it is a welcomed housemate!

I'm also finding that many people over the age of 60 wonder what all the fuss is about. They tell me that they 'didn't have M.E in their day'. Actually...yes they did. It was just not spoken about and was even more of an invisible disability than it is now. Social media is a relatively new phenomenon, imagine having M.E decades ago and not having access to our support network? 

I love our M.E community. The majority of us support, advise, and keep each other afloat. Thank goodness for social media! 

Love,

Sally
and Foggy (obviously)

GET/PACE Trial

Hello,

I haven't commented on this previously because I am not a medical expert and thought I'd leave it to charities etc to discuss it fully. ME Foggy Dog concentrates on raising awareness of ME from a human perspective and usually avoids serious political stuff. However, I have now had a few days to think it over and here are my thoughts.

As I have said many times before, prior to starting Foggy I knew very little about M.E. I received a half-hearted diagnosis and was sent for CBT after having symptoms for 4 years. The only symptoms I really understood were fatigue and post-exertion malaise. I have learned over time and now realise that I have many more symptoms than I thought and appreciate the very complex nature of the illness and associated political nuances.

Since diagnosis in 2011, none of the GPs I have seen have ever mentioned GET to me (I have changed practices during that time). GET has never been on my radar. I have been encouraged to exercise more as a way to tackle my low mood/anxiety/depression but it has never been suggested that exercise would improve my M.E.  I do wonder if it was a sideways tactic to try exercise and 'help' my M.E, but that's just a guess. I'll never know! 

My lack of awareness of GET is hardly a surprise. My ME brain can't cope with reading full text research documents so I tend to read summaries from other people (Thank you to those people who work on creating summary documents!) Sometimes, I get the impression that ME isn't on the radar of many of the healthcare professionals I see. I see mentions of drugs and therapies online that I have never heard of let alone had suggested to me by my doctor. I used to be very naive, I believed what I was told by my doctor and took their advice as fact. I don't anymore. Our M.E community will always know more about our illness because we have to. Many Foggy Followers have tried many....many...different remedies to see if they can find a way to get an improvement in symptoms. Some might think that is dangerous...yes, I suppose it could be. But that's how desperate our community is. 

This week saw a Parliamentary debate on the PACE trial.  I RT'd, shared and commented to make sure Foggy's Followers could engage with it. Hand on heart, I had very little idea of what I would be watching. These points are what I took from it:

• DWP part-funded the study (WTF?!  Dodgy) Non-UK people, DWP=Department of Work and Pensions. I would suspect that they encouraged results to get more people back in work and off benefits.
• If Post-Exertion Malaise is a significant symptom of M.E, how on earth could Graded Exercise Therapy (GET) help us to get better? Is it not BLATANTLY OBVIOUS that exercising won't 'cure' us?
• The lives of ME sufferers were put at risk to trial a ridiculous research hypothesis (I realise that legally these patients gave consent but as I have said above, sufferers would try ANYTHING to get better).
• The biggest shock was the link to insurance companies. I personally think it is disgusting that many ME sufferers have to undergo GET in order to get insurance cover. They have to risk significantly damaging their health to get cover. I did not know that prior to the debate.
• Caroline Dinenage MP - Clearly doesn't have a clue about ME as she said sufferers can be bedbound for weeks. WEEKS??!!!!! Try months, years, or decades (depending on severity of ME)! The impression I got was that she was there to fill time (she repeated much of what had already been said) and to ensure the subject was not fully debated. The debate was only given a 30 minute slot.
• Carol Monaghan MP is Foggy's latest favourite lady. She did an absolutely fantastic job. Highlighting our plight with determination and empathy. Thank you Carol.

So, now we have dreams of a wider debate, let's keep our fingers, paws, eyes, and legs crossed that GET can be debated fully in the near future.  To hear a member of Parliament state that GET/PACE trial was a 'miscarriage of justice' will, hopefully, be an eye-opener for many.

Here is the ME Association response to the debate  - http://www.meassociation.org.uk/2018/02/government-funded-me-cfs-trial-one-of-greatest-medical-scandals-of-21st-century-20-february-2018/

Love,

Sally 

and Foggy (OBVIOUSLY) xxxx

Payback Causes Us to Micro-Manage Our Energy!

Hi,

In my video yesterday, I mentioned that I was delivering a Foggy-related social enterprise talk last night and that I was having to rest to make sure I was up to it. However, THIS happened.

This is in no way a negative comment about the event, the organisers had done everything they could do to ensure attendance. It was just one of those things. That didn't help me to manage my energy levels though.

I was contacted last Friday via LinkedIn and asked if I would like to talk at an event that was organised for students who were interested in social enterprises.  It was a bit last minute, but I saw it as a way for Foggy to reach people who wouldn't usually be within my reach. So I said yes. I already have an immense workload that I am struggling to manage (I can work 3-5 hours per day, depending) but felt it was worth my while.

I have been creating the slides and prompt cards (essential when you have poor memory/concentration) over the weekend in slow time. I knew I would have to preserve valuable energy as the talk was to be held between 6-8pm (I was one of 3 speakers). I knew just the act of

sitting and listening/participating would take its toll on my M.E. So I was trying to be careful! Then I realised the Parliament debate was also happening yesterday. My plans of resting as much as possible went out of the window. I managed to grab an hours sleep yesterday afternoon and hoped that would be enough to 'recharge' myself as much as possible.

I got showered, dressed, got my stuff together ready to head off. I had an incredibly hot face, usually a sign that my symptoms were beginning to flare, but headed out to the venue. I got there 15 minutes early (military family upbringing....need I say more?!), met the organiser, took a seat and waited for people to start arriving. 25 minutes later, 3 people had arrived.

This is when my brain started to consider whether GUARANTEED payback would be worth it for the sake of 3 people. Business people I know say you should always deliver the talk regardless of how many people are in the room. Those attendees have made the effort to come and hear you speak. True.  However, I know that I will be feeling really.....really...unwell tomorrow because of exerting myself on Tuesday evening, for the sake of 3 people and a poorly attended 2 hour event. Deliberately making myself feel like poo would have been worth it if I could have reached a minimum of 15 people (as expected) but I took the decision to leave. I hadn't left them in the lurch as there were 2 other speakers who stayed and were happy to sit and chat informally to the students who had attended (WOW - imagine how that would have wiped me out!? 2 hours of conversation). I felt really guilty though. 

This is just one example of how we have to carefully consider what to spend our precious life-resource (energy) on. Two days after exertion, will we kick ourselves with the realisation that we should have not gone to the party, gone grocery shopping, met up with friends, delivered a talk, as it was not worth the sheer rubbish-ness that came with it? I will have payback tomorrow, I know I will. But, it will be less than it would have been if I had stayed until 8pm. Good decision.

Love,

Sally
and Foggy (OBVIOUSLY) xx

Cause and Prognosis

Hi,

I have been made aware today that some people believe the cause of M.E is known and that sufferers know what their prognosis is. I disagree. This blog will explain and clarify my standpoint.

I believe that a bout of Labyrinthitis (ear infection) was the trigger for my latest bout of M.E. However, it was not the cause of the illness. We don't yet know why one person, let's call her Sarah, gets Labyrinthitis, is laid low for 6 weeks but then gets back to life as normal with no repercussions. But another person, let's call her Tracey, has Labyrinthitis for 6 weeks, is well for a week but then

gets ill....very ill (as happened to me). Tracey's simple ear infection had triggered a debilitating chronic illness. Until we know the reason behind the two different outcomes, we don't know the cause of M.E. I run with the notion that there is something dormant within us, perhaps in our DNA or gut, that is activated/triggered by a virus, trauma, etc. But researchers have not established what that 'thing' is yet.

At the beginning of this blog, I wrote 'my latest bout' - this is my second bout of M.E. I had (undiagnosed) M.E in my teenage years. I became ill virtually overnight (we have never worked out what the trigger was) and it left just as quickly 2 years later. It is due to my first bout that I believe many of us don't have a prognosis. I have no idea if this second bout is lifelong or if it will vanish as quickly as the first bout many years ago. It's a mystery! 

This is what the M.E Association say about prognosis - www.meassociation.org.uk

What are the chances of recovering from ME/CFS?

Most people with ME/CFS fall into one of four broad groups:

• Those who manage to return to normal health, or near normal health, even though this may take a considerable period of time.
• The majority who make some degree of improvement but eventually tend to stabilise. They then follow a fluctuating pattern with both good and bad periods of health. Relapses or exacerbations are often precipitated by infections, operations, temperature extremes or stressful events.
• A significant minority of patients remain severely affected and may require a great deal of practical and social support.
• Continued deterioration is unusual in ME/CFS. When this occurs, a detailed medical re-assessment is advisable to rule out other possible diagnoses.

Using the above as a guide, I have no idea if I am in the first or second group. I may get better or I may not. I am now 11 years into this second bout with no signs of getting better. Symptoms are ebbing and flowing, some have improved whilst others have got slightly worse. My cognitive function has deteriorated over the past 6 months. I am hoping it is just temporary. I have spoken to a few other sufferers who are experiencing the same fluctuation in cognitive function so I know I am not alone in that.

It is true that severe M.E sufferers have a greater sense of prognosis (see group 3) but mild/moderate sufferers like myself don't have any idea of what is in store for us. We have no idea if our, occasional, slightly improved health means we are 'recovering' or if it is simply a fluctuation. 

I hope that clears that up and, despite a few followers disagreeing with me, I will continue to promote that we do not know the cause or our prognosis, until I see definitive proof to the contrary.

Love,

Sally

and Foggy (OBVIOUSLY) xxx

Family Ties With M.E./C.F.S.

Hi,

This post is considering whether M.E can run in families. I was unable to find anything on the M.E Association website but found this link from meresearch.org Does M.E/CFS run in families?

Anyone who has watched Unrest has seen that different generations of the same family can be struck down with M.E. Personally, I know a number of families that have two generations with the illness. It is hard to know whether it is due to genetics or probability, given the high number of sufferers in the UK/worldwide.

For years, it has been a running joke in my family that I have inherited all of the bad bits from my parents. My Dad has stretchy skin (Hypermobility Syndrome - without the pain), various allergies that have appeared over time, and in later life, has developed digestive issues (I.B.S/Colitis) and my

My family xx

Mum has suffered from migraines and light sensitivity for decades. It will always be a mystery as to whether the combination of their health conditions has lead to my M.E diagnosis. There doesn't seem to have been a recognisable chronological order as ailments have appeared out of nowhere with no identifiable cause.

I have had conversations with parents who blame themselves for their child's health problems; not just M.E, other illnesses too. Which, as I have said to them, is ridiculous and their child's illness was entirely unpreventable. It is simply how things have evolved and presented themselves. 

Something I have been struck by is how sometimes the child gets M.E first and the parent gets diagnosed decades later. Does that strike anyone else as odd? I have personally met these families and their circumstances make no sense to me in terms of chronological order. Does it worry me that my parents could get M.E? Yes, yes it does. Especially as each month brings new health issues that may or may not be M.E related - fatigue, memory, word finding problems etc. It could just be ageing but it could also be something more sinister. I am definitely keeping an eye on my parents....just in case.

Love Sally,

and Foggy (OBVIOUSLY) xxxx