Enter your email address here if you want to follow Foggy via email

Wednesday, 14 March 2018

PACE Trial: The Movie


Now this is going to a random blog post but it was inspired by watching The Rainmaker during a rest afternoon yesterday. Anyone who hasn't seen this 1997 film, sorry but I'm going to spoil the ending for you! It struck me that there are similarities between John Grisham's fictional tale and our real life nightmare with the PACE trial, DWP, and insurance companies.

The synopsis of the film is:

A family have paid health insurance premiums for years but are denied cover when their son becomes gravely ill with Leukaemia. The
family are told that a bone marrow transplant could save him but the insurance company deny their claim 8 times. The family call in a newly qualified attorney to help them to fight the corrupt insurance company. There is a tense courtroom battle with this closing argument scene. The family win the case and win $50m in punitive damages. The insurance company goes bankrupt due to the other cases that should have also been paid out.

Am I the only one who can see 'ish' similarities with this book/film and our PACE trial issue? If only Hollywood/authors would wake up and create a film to highlight how this scandalous treatment is actually happening in real life to thousands of people. 

Just imagine if someone took the Department of Work and Pensions (DWP) (are we able to sue a government department?!) and health insurance companies to court. They knew that the PACE trial was deeply flawed and was severely detrimental to the lives of those M.E patients who participated in the research study, or had Graded Exercise Therapy (GET) prescribed as a result of published findings. Despite this, insurance companies refused to cover claimants unless they had participated in GET. Many of these claimants subsequently endured deteriorating health because of GET and became housebound/bedbound as a direct consequence of the insurance company instructions.

I reckon John Grisham could turn our plight into a bestseller. Our plight doesn't just affect one person, it affects thousands of desperately ill people around the globe.  The closing argument would have a montage of a selection of thousands of people detailing how their life was destroyed by GET. It would make for one hell of a courtroom drama. 

It's a mystery at the moment as to how the PACE fiasco will pan out, we have a very long road to travel to get answers, apologies, and recognition of both our illness and of the damage caused by PACE/GET. In the meantime, let's all dream that one day insurance companies, and DWP for that matter, get the comeuppance they deserve.

The PACE trial has already become a case study for legal professionals.https://www.roydswithyking.com/pace-trial-scandal-me-cfs/


Sally xxx
and Foggy OBVIOUSLY)

Sunday, 11 March 2018

Explaining M.E to children


Yesterday, I attended a local International Women's Day/Young Women's Day event. I was taking part in speed meetings which gave girls aged 11-19 a chance to talk to 'inspirational women'. I took Foggy along to show how I raise awareness of Myalgic Encephalomyelitis (M.E) and I think having a soft toy there helped them to relax a bit. Surprisingly, I found it incredibly difficult to explain what M.E is to young people who have no knowledge of the illness. I became very aware of just how many very long words we, the M.E community, use to describe our illness. One of the youth workers helped me out by saying it is also known as Chronic Fatigue Syndrome, which I guess would be slightly more understandable, but I HATE using that name and didn't want to use it! . 

I really didn't do a good job in terms of describing what M.E is. This is a worry for me as the new social enterprise will include training for teachers and a fun info section for children. Teachers can refer classes to this info to learn about the illness. I need to come up with very basic language to accurately describe our complex neurological condition.

In my defence, I have very little contact with any human beings under the age of 16. I find it very difficult to 'dumb' down what I need to say. I usually resort to 'have you ever felt really poorly and don't want to get out of bed or move around? That's how I feel every day', that kind of thing. Hardly an accurate description! It's not as if I can point to a skin rash, plaster, swollen limbIt's an invisible disability. It is going to be difficult to get a child to understand that. I'm sure M.E peeps who are parents do an element of storytelling when they are describing their M.E experience to their children. For example, 'Remember when Mummy couldn't get the washing out of the washing machine? I felt really tired and my arms were hurting'. That kind of thing, please let me know if I am way off the mark. Talking about M.E to children has never been on my radar and it's something I have got to learn.

21,000 children and young adults have M.E in the UK. Teachers and their students need to know about, and understand the illness. How can we expect schools to know how to support their students if they have no idea how M.E affects sufferers? We all know that the official info schools have access to is not fit for purpose. Anyone taken a look at NHS Choices recently? Perhaps they have a GP contact? If healthcare professionals don't have training either it doesn't bode well! Yes, there are specific M.E children's charities such as the Tymes Trust but would schools know to contact them? I'm going to reach out to UK schools and deliver the info before the need to offer additional support arises. I have been contacted by Headmistresses in the past who are desperate for info because they have just found out that 5 students in their final school year have been diagnosed, and they have no idea what additional support should be offered. I'm a strong believer in 'forewarned is forearmed'. Headmistresses, teachers, and teaching assistants will be able to instantly support a student without delay after receiving my training. I raise awareness of M.E from a human perspective so that it is easy to relate to, hopefully that will help the training to be as effective as possible.

I had un-diagnosed M.E in my teenage years and I was very lucky that my school had a policy of sending classroom notes/homework home if a student had a high level of sickness absence, whatever the illness or whether the student had received a diagnosis. I have asked my parents and they don't remember if they had any input in that decision. That was over 25 years ago and I doubt very much that M.E or the dreaded name Chronic Fatigue Syndrome would have been on their radar. I was able to complete the work at my own pace. I came away with 9 GCSEs above grade C so it was a policy that worked for me personally

If you are a parent of an M.E sufferer (16 yrs and under), could you ask them how they explain their illness to their friends? I need to know what language they use themselves. Rather than how an adult explains an illness to a child. I need to get my approach spot on. I hope you can help me with that. Please contact me via the contact button on MEFoggyDog.org.


and Foggy (OBVIOUSLY)

Sunday, 4 March 2018

2008: Mid-Diagnosis

This illness is making my life drain away and it doesn't feel like I have much left. 13 months of misery is just too much to bear without being diagnosed yet. It feels as if I've lost most of my friends because I can't put the time/energy into those friendships, and it now grates every time I have to decline invitations due to ill health. I just want to be diagnosed in order to be able to control my symptoms and subsequently my life.

That was me, this was a diary entry dated Tuesday 1st January 2008. My symptoms had started in October 2006 and I was in the middle of the long journey towards getting a diagnosis (If only I'd known that the diagnosis wouldn't end my difficulties!). I am sharing this personal diary entry in the hope that people will understand that I am genuine when I say that I understand. I've been there. Later diary entries mention referrals to psychiatrists and being on a suicide watch list (I can't remember the term but that covers it). I was as low as it is possible to get in M.E terms. I didn't feel as if my life was worth anything. I have ongoing PTSD and depression (combo of M.E, a #metoo incident, and workplace bullying), luckily, I have people around me who still support me during very trying times. 

I made the decision to keep ME Foggy Dog as lighthearted as possible for two reasons.
1. I can bring some sunshine into the lives of people who are struggling.
2. Positivity grows engagement with our cause much more effectively than negativity.

To be clear, I 100% think that M.E is a life-destroying illness and can fully understand when people living with M.E vent their anger. However, I find that people tune out of such overt negativity. We need people to listen, not turn their backs. 

A few people have been offended/upset/annoyed when I have asked them to write Foggy a guest blog in a positive way, devoid of political opinion or rants. I am set on this approach because I want M.E peeps to tell THEIR M.E story, how it affects them, and what their hopes for the future are. You can
be surprisingly effective by simply telling your personal story. I'm not asking for Disney-style singing and dancing positivity, just steer clear of negativity. Let people see the people behind the statistics and political debate. There are plenty of other organisations to write for if you want to share your opinion about GET/PACE or about the neglect of M.E patients. Unrest and Jen Brea are a case in point, it is essentially a love story that highlights our M.E fight. Positivity works.

I used to have a very negative mindset and it was at risk of driving my friends away. I would see the negative viewpoint with absolutely everything. That was until I attended a seminar from Andy Cope (see The Art of Being Brilliant). He is an advocate on happiness and positivity. He showed me that there are ways to be positive in the most devastating of circumstances. Thank you Andy. I try my hardest to not be a 'mood hoover'.

I find negativity breeds negativity. This is also why I never respond to negative comments on my tweets. I will not enter into an argument online. I struggle to keep my mood upbeat so actively avoid anything that would affect that. I raise awareness of our cause by sending a soft toy around the world, I use soft and fluffy adventures to highlight a seriously debilitating illness. Not a smidge of negativity in sight.


Sally and Foggy (Obviously) xxx

Don't forget to donate via mefoggydog.org.  Thank you x

Tuesday, 27 February 2018

Awareness Reach


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! 


and Foggy (obviously)

Saturday, 24 February 2018



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.


and Foggy (OBVIOUSLY) xxxx

Wednesday, 21 February 2018

Payback Causes Us to Micro-Manage Our Energy!


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.


and Foggy (OBVIOUSLY) xx

Friday, 16 February 2018

Cause and Prognosis


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.


and Foggy (OBVIOUSLY) xxx