I have had non-stop health rubbish going on since August, this blog is specifically about the past month! Pain, pain, and more pain!

As people living with M.E. know, pain is exhausting. With that in mind, I typed basic info into Chat GPT and it has created a case study that explains everything that has been going on for the past month. I’ve been posting on social media about it quite a bit and I know many of you have questions and/or are going through similar. I just don’t have the energy to go over (and over and over) this claptrap. I’m sharing because I think transparency is key to effective advocacy. This blog identifies a problem with GP services right now and how it impacts individual patients.  I don’t just represent people with M.E with my advocacy, I go through this nonsense myself as a person with multiple chronic illnesses and a complicated medical history!

Case Study: Managing Complex Pain in a 48-Year-Old Woman with Multiple Medical Conditions

Patient Profile
A 48-year-old woman with a history of multiple chronic conditions, including Myalgic Encephalomyelitis (M.E.), Fibromyalgia, Hypermobility Syndrome, and Osgood-Schlatter Disease and Chondromalacia Patellae.

Medical Background
The patient had previously managed her Fibromyalgia symptoms with Gabapentin (recommended by Rheumatology and prescribed by GP), but after experiencing a reduction in pain a year ago, she successfully weaned herself off the medication. At that time, her pain was tolerable, and she felt that discontinuing the drug was appropriate. Recently, however, her Fibromyalgia symptoms worsened, prompting her to contact her GP for a repeat prescription of Gabapentin. Unfortunately, she discovered that Gabapentin was no longer listed in her repeat prescriptions, and she was instead referred for physiotherapy.

Acute Pain Episode
Approximately a month after her contact with the GP, the patient experienced a new pain episode when she trapped a nerve in her back on the left side. Due to an altered gait, she developed significant pain in the opposite knee the following day. This pain was intense, and she resorted to paracetamol and ibuprofen, as well as heat and ice packs for relief. After the weekend, when the pain persisted, the patient used the GP’s e-consult system to request stronger pain relief.

Walk-In Centre Visit
The GP surgery advised her to visit the local walk-in centre for further investigation. The patient was diagnosed with tendonitis and was instructed to return to her GP for stronger pain relief. The GP practice subsequently prescribed Co-Codamol for pain management.

Worsening Symptoms and Complications
Five days later, the knee pain persisted, and a painful lump the size of a golf ball appeared suddenly on the outer upper side of her knee. The lump was compressing a nerve, leading to excruciating pain radiating down her lower leg, knee, and thigh. Any movement was agonising, and the patient was unable to move. She contacted friends with medical knowledge who suspected bursitis, and a quick internet search suggested ice and anti-inflammatory medication as treatments. However, these measures did not alleviate the intense neuropathic pain.

In desperation, the patient remembered that she had Gabapentin tablets prescribed for her dog’s spinal issues. She took two tablets, and within an hour, her pain was under control. Having these tablets available allowed her to manage the pain over the weekend.

Request for Gabapentin Prescription
On Monday, the patient contacted her GP surgery once more to request a repeat prescription for Gabapentin. She spent 15 minutes trying to reach a receptionist, and upon answering, she was asked if she was registered with the Anima system. After confirming, she was told that a query would be submitted on her behalf, and someone would call her later that day.

Realising she hadn’t had an opportunity to explain the issue, the patient logged into the Anima system herself and submitted an e-consult form. Three hours later, she was asked to submit photos of both knees for comparison. After doing so, she received a message stating that Amitriptyline would be prescribed and that she should “trial” it.

Response from GP Surgery
The patient was concerned about the proposed prescription of Amitriptyline, as she had historically experienced sensitivities to this medication. She sent a follow-up query to the practice, explaining that Gabapentin had been prescribed to her in the past by both Rheumatology and her GP and had been effective in managing her neuropathic pain. She also noted that her current condition, including her Fibromyalgia and knee/nerve issue, would benefit from Gabapentin.

Within ten minutes, the surgery responded, stating that a telehealth appointment would be scheduled in 3-4 weeks. In the meantime, the patient no longer had access to Gabapentin (since the medication had been for her dog and there weren’t many left), leaving her without any medication for her neuropathic pain.

Key Issues and Challenges

• The patient’s difficulty in obtaining appropriate pain management was exacerbated by the GP practice’s refusal to prescribe Gabapentin despite it being part of her previous treatment regimen.
• The delay in addressing the patient’s pain was compounded by a lack of communication and follow-through from the GP practice.
• The alternative medication, Amitriptyline, was not a viable option for the patient due to her known sensitivities to the drug.
• Despite being actively involved in her healthcare and attempting to communicate her needs, the patient faced significant barriers in receiving appropriate and timely pain relief.

Conclusion
This case highlights the complexities of managing chronic pain in patients with multiple underlying health conditions. It also underscores the importance of clear communication and continuity of care between healthcare providers and patients. The patient’s experience reveals the challenges faced when navigating healthcare systems, especially when medications are withdrawn or altered without adequate alternatives or explanations. Furthermore, the case demonstrates the need for personalised treatment plans that take into account the patient’s medical history, previous treatments, and sensitivities.

**Maggie’s drugs** To confirm, Maggie’s Gabapentin use is approved by her vet. They are exactly the same drug as humans take. Fortunately, she had a strip of tablets left (reorder done today), she has enough tablets to last until her new batch are ready for collection (I have not deprived her of medication/caused her pain). Taking her medication will not become a habit of mine! But desperate times call for desperate measures! Sooooo much pain!

My Hypermobility Syndrome worsened at the exact same time that my Fibro flared – both were mentioned in e-consult submissions to the GP. I believe both were impacted by the COVID19 infection I had in August. My left shoulder has never been particularly impacted by Hypermobility Syndrome (my right shoulder has always been bad) but now feels very loose and painful. The Physio concentrated on this rather than the Fibro pain when I saw him last week – we are ‘strengthening’ the muscles around this area.

I feel ‘stuck’. I have no way of getting hold of a drug that I know works well for me right at a time when I need it the most. My Fibro pain is mostly impacting my hands, arms, upper back and neck and is becoming unbearable without appropriate medications. I’m at that point of being sick of being in unnecessary amounts of pain and am feeling sorry for myself. If this is also where you are right now, I see you, I ‘get it’.

Love Sally

and Foggy (OBVIOUSLY) xx

The post Pain and the Battle For Medication first appeared on ME Foggy Dog.

You know THOSE people?

THOSE people who say YOLO? (You Only Live Once)

THOSE people who throw caution to the wind and take risks due to the widespread belief that the medical profession can fix everything and get bodies ‘back to normal’ if anything ‘goes wrong’?

What happens when the problem is common but not fixable?

Caught a virus? Take paracetamol and stay hydrated. You’ll be better in a fortnight.

Having surgery? You’ll most likely be better and fully functioning within a few months after participating in physiotherapy.

Getting vaccinated? You might have minor side-effects for 24 hrs but then you’ll be fine.

These 3 things are some of the triggers for Myalgic Encephalomyelitis.

Viruses, surgery, vaccines.

People living with M.E/C.F.S become unwell and start looking to be fixed.

This is when patients face –

– nothing showing up in tests
– disbelief from medics,
– being told there are no treatments or cure
– being told that 5% get better and most will be ill for the rest of their life OR not being told this at all and having their illness downplayed.
– snake oil salesmen promising the world, costing the earth, but M.E-related quality of life and ill health will not improve.
– loss of relationships and friendships due to poor understanding of the disease and stigma.
– loss of employment as employers struggle to understand/support people with Myalgic Encephalomyelitis.
– being denied disability benefits because of the rife deliberate misinformation on the disease.

Individuals living with the disease are worth £1.50 per year to the UK Government. That’s how much funding we were given per patient per year in 2019 (around £450,000). I am currently waiting for responses to Freedom of Information requests asking for information on how much funding M.E was given in years 20/21, 21/22, and 22/23 as this information is not available/impossible to find online.

With that negligible level of funding, M.E will never get a biomarker/diagnostic test, treatment, or cure.

There are now 1.25 million people living with this disease in the UK, an updated global prevalence statistic is near impossible to estimate at the moment due to multiple factors including variable Covid19 rates, and lack of data. However, I believe it is likely that the pre-COVID19 global prevalence of 17-30 million has at least tripled since 2020.

All of the above is why I have reached my limit of putting up with the status quo. If Governments will not take M.E seriously and continually reinforce the brick wall that I have been banging my head against for years, then I will take another route. I will go around the wall.

That’s why I set the Redefining Gravity challenge. Let’s change the narrative –

Redefining Gravity

See redefininggravity.co.uk for all info.

Get in touch if you have the skills, talent, expertise, knowledge, or connections to help with this challenge. Thank you.

Sally

ps. Foggy’s Global Challenge is running at the same time as Redefining Gravity, both campaigns aim to raise as much money as possible in one year. Both JustGiving links and Foggy’s *NEW* Google Maps map can be found on mefoggydog.org

The post Myalgic Encephalomyelitis, YOLO, and Being ‘Unfixable’. first appeared on ME Foggy Dog.

This reporting system is still necessary.

Dear Secretary of State, 

 

I am writing to you again regarding my campaign for a reporting system to report harms from non-pharmaceutical ‘treatments’. I have previously been told by your Department multiple times that the need for this system no longer exists due to the NICE guideline.

 

However, I have myself provided proof that recommendations to ‘increase activity’ and participate in CBT are continuing post-guideline publication.

 

To reinforce what I have been telling your department for the past 18 months, last week The Times wrote this article the sub-heading of which states ‘National treatment guidelines published two years ago are still not widely implemented, says charity’. The charity in question was Action for M.E who have just published this research.

 

As you can see, non-adherence to the NICE guideline is rife.

 

This matters because ‘increased activity’ and CBT as ‘treatments’ harms ME/CFS patients. COVID19 has triggered 100s of 1000s of new cases of ME/CFS. I estimate there to be around 1 million cases of ME/CFS in the UK now (half of Long COVID meet ME/CFS diagnostic criteria). When these treatments remain the ‘go to’ treatments for the NHS, that is a lot of people who will be deteriorating as a direct result of non-pharmaceutical ‘treatments’. These are the people you want to get back to work, not becoming permanently disabled due to non-adherence to the NICE guideline.

 

I recently attended a UK third sector meeting, in which a representative of NHS England stated that it would be ‘impossible to implement NICE guidelines due to the pushback’ (from RCGP etc) – for a range of diseases including ME/CFS. If this is the case, we need a system to report harms if the Government has no intention of implementing the guideline.

 

I look forward to hearing from you.

I suggested the the NHS England representative that if there was no intention to implement the NICE guideline then they could, as alternatives, push forward with education or tackle the stigma that is rampant within the NHS about our disease. I could see nodding heads in this online meeting, ours is not the only community facing this problem.

My thoughts on the subject –

Please engage with Shake It Up if you haven’t done so already, there is an international petition and wider campaign for UK residents.

Check it out here! 

The post Shake It Up: Email to Steve Barclay MP – Secretary of State for Health and Social Care first appeared on ME Foggy Dog.

I don’t know about you but, for me, 2021 flew by!

I’ve not kept track of what month we are in throughout the entire year! It’s all been very same-y and seasons have all blended from one to the other. I haven’t had the usual Foggy ‘milestones’ to judge where I’m at. This is mostly due to shielding 98% of the time, my life has been devoid of social cues – other than those seen on social media or in private Whatsapp messages.

2021 has been a pretty rubbish year all-round but I’m going to squeeze my memory bank to come up with some positives.

My first post of 2021 (1st January 2021 at 08.15)

Did our dreams come true?

Here are the highlights of 2021 for Team Foggy.

Awareness

‘What is M.E? (January 2021)

Watch   What is M.E?

Video recorded during lockdown, completely a DIY effort and from a very dodgy camera angle but….with the help of a ‘video-editor’ this video was produced. A combination of worsening illness and software no longer being available = my brain can’t cope with complicated video editing like it used to in 2014-2018! Long term Foggy Followers will know that my content has changed over recent years….in fact, since my Windows 7 died. RIP. You are missed!

Press Nonsense

There has been a LOT of reactive negative, but necessary, stuff that has had to be addressed over the past year. PG being on BBC Breakfast and being unchallenged after erroneous claims were made, inaccurate and downright offensive rubbish has been printed in the UK press ALL YEAR. My advocacy has reflected that. I started an ‘Online Journalist Resource’ but stopped my efforts when it became clear that other orgs were doing the same. As with all people with M.E, I have such limited energy, I don’t waste it on duplication. It’s wasted effort and energy.

Legal Fund

Then came the ‘Legal Fund’.

Blog post – M.E/C.F.S Patients’ Legal Fund. (Explainer video) I thought this was such a good idea but I found many M.E patients couldn’t understand what the money would be used for. I did as much as I could to increase understanding but this was another idea, start of a campaign, that came to nothing. Thank you to the MANY advocates and pwME that privately messaged me with support during these stressful weeks. There have been a few instances since where this legal fund would have been a great asset for our community to have but, that idea has now been and gone.

Fundraising

Watch this – How we fundraise  THIS is the case whether Team Foggy are actively campaigning or not. You can donate all-year round via Paypal – link/button is on our home page –  mefoggydog.org .  Cure ME are currently requesting donations, they need funding. If you donate via Paypal through ME Foggy Dog please make it clear it is for Cure ME and we will allocate accordingly.

Team Foggy’s AWESOME friend Ryn and her husband John displayed fantastic entrepreneurial spirit during the summer and raised £488 to be split 50/50 between   Cure ME and ME Foggy Dog. They had a flower stall outside their home for months and neighbours, family, and friends donated plants, pots, and other items to sell. Fantastic community spirit!! Ryn is already planning on repeating this mini-enterprise next year. All money raised for ME Foggy Dog will be put towards our future fundraising events for Cure ME.  Ryn and John’s ‘flower stall’ fundraising featured in a LSHTM blog post! ME Fundraiser  – Ryn Stevens.

Long Covid and M.E/C.F.S overlap

This is something that has been making my head hurt for over 18 months.  Watch – My recommendations for managing Long Covid. It’s been tough, HARD work trying to get local/central Government to listen. They are all stuck on the ‘it’s a completely new phenomenon’. Uh….nope. Extra frustrating given that we KNOW that many Long Covid cases are being diagnosed as M.E/C.F.S.

M.E Awareness Week 2021

Ha! The plan was to ‘cut back’ on my activities during our awareness week. I raise awareness all-year round so any increase wipes me out. I ended up doing more work than ever within a shorter period of time. As I said at the time, M.E patients were not my target audience (though I was grateful to all who tuned in) and so the length of the ‘talk’ was appropriate for ‘healthy’ people not M.E patients. As I’ve said a million times since 2014, we should always reach outside of our bubble with our awareness efforts. So, you can imagine how surprised I was to be criticised, by people within our community, for holding an awareness event that was 1 hr 15 minutes in length. Particularly given that most business webinars and online events I tune in to every week are the same length of time. It caused a significant crash but I was happy with the turnout and feedback from ‘healthies’.  Watch it here – in chunks if you have M.E! Read about how it went!

The NICE ‘Pause’

Blog  – This was written BEFORE the nonsense started. So, this blog is a positive highlight!

Team Foggy had T-shirts  and a strong opinion about the delay!

Read our article in Posability Magazine (Pgs 48-49)  ‘An Unprecedented Pause’

The NICE Publication!

29th October 2021, not as all-changing as we would have liked and it is increasingly clear that many medics/NHS/Department of Health and Social Care simply will not budge with their false beliefs re. exercise and CBT for M.E.

So…..

ME Foggy Dog launched a petition…..and then a wider campaign.

Shake It Up!

This has kept me busy and out of trouble for the past 4 months, the petition was launched on 2nd November and the wider campaign, with the help of Kat Gower, went ‘live’ on 25th November 2021. I’m in no doubt that this will be a hard slog and may well be ongoing over Summer 2022 and beyond. It will involve a complete 180 degree turn in mindset.

Podcast – ‘Shake It Up’! (available for 90 days) I was joined by Kat Gower, Linda Hending, and Steve Topple for a chat about the need for this new system. Also available in our Patreon channel podcast ‘archive’.

‘Transcript – FogPod ‘Shake It Up”

Please do sign the petition and take part in the ‘Shake It UP’ campaign. Every signature (anyone, anywhere, can sign) and/or email to your MP and Lord Kamall (UK residents only) counts and matter to me personally (Thank you).

Steve Topple (The Canary) wrote this article about the issue we are tackling with ‘Shake It Up’. Thanks again Steve.

There are more ‘phases’ of this campaign to come in 2022, please do keep your eyes peeled for the latest developments on whatever social media channel you use.

ME Foggy Dog has a presence online in a lot of different places!

Our website – mefoggydog.org

E-newsletter (sign up in  the footer of the website)

Twitter – @mefoggydog

Facebook – @FoggyDog

Instagram – @mefoggydog

Spotify

Buzzsprout

Google My Business – If you are a fan of Team Foggy, could you leave us a review? Let people know how awesome we are? Review us

We Are A Social Enterprise!

ME Foggy Dog has been a social enterprise since September 2018, it became one at the same time that I launched Stripy Lightbulb CIC. ME Foggy Dog has won awards as a social enterprise. But…..I forgot to become a member of Social Enterprise UK until this week. MY M.E brain thought that I did this years ago as I have participated in SEUK campaigns and won an ‘award’ from them…doh. So, Foggy now has a couple of shiny new badges on his website. Social Enterprise UK has been very supportive of all of my M.E work for a few years now…I can’t believe (I have M.E – it’s easy to believe!)  I forgot to join their membership.

Shiny new badges –

Anyone unsure of what a social enterprise is?

It’s a not-for-profit business that works for the benefit of a cause or community. There are different business models within the term ‘social enterprise’, ME Foggy Dog is a sole trader model.  I run it like a normal ‘sole trader’ business but 50% of our surplus (AKA profit), when we make some, will go to Cure ME for biomedical research. We are continuing with our fun fundraising campaigns too so from the outside it doesn’t look like we’ve changed much over the years but….we have! It doesn’t help that one year into becoming a business,  I had put ME Foggy Dog to one side while I concentrated on Stripy Lightbulb CIC for the first year, the pandemic hit and most of our revenue streams were not possible. That’s why we haven’t made a surplus (profit) YET. It’ll happen…..one day!

In our case, we work for the benefit of the M.E/C.F.S community.

Always have, always will.

2022….here we come!

We are reeeeeeeeally looking forward to injecting a bit of fun and globetrotting back into our lives. Hopefully, that will be possible in 2022. As I have said a number of times during the pandemic, our usual ‘World Tour’ activities are simply too risky given that ‘Foggy-sitting’ involves trips out and taking Foggy to the ‘Departure Lounge’ (Post Office). That’s simply not possible when so many countries are intermittently in lockdown and I wouldn’t ask an M.E patient or their family to put themselves at risk of catching COVID19 so Foggy can get home.

If you have any ideas re. fundraising during the pandemic please let me know!! It’s frustrating as in February 2020 I had MANY plans afoot in terms of face-to-face fundraising events. All scrapped/on hold.

That’s it.

That’s our 2021 wrapped up in blog form.

We hope you have enjoyed following us this year, it’s certainly been a rollercoaster!!

I’ll be stepping away from ME Foggy Dog between 21st December 2021 and 2nd January 2022. I need to recharge and reset ready to tackle whatever 2022 throws at us!

Wishing you all a Happy Christmas and, whatever you are able to manage, we hope that you are able to take some joy from the Christmas period. Please know that if you do find you are struggling in terms of your mental health there will be organisations available 24/7 to help and support you. You are not alone.

Ho ho ho!!

Love

Sally

and Foggy (OBVIOUSLY)

xxxxxxx

The post ME Foggy Dog’s Highlights of 2021 first appeared on ME Foggy Dog.

This year, my P.A will be hosting a virtual ‘International M.E Awareness Day’ event. It’ the first time she’s ever hosted an event on Zoom so it should be INTERESTING! I’ll let her tell you more about it in this blog. I’ll be in Foggy HQ with her during the event but…..she’ll be doing all of the work! (As usual Foggy….as usual!)

To all of my wonderful M.Eep Followers, lots of love and Foggy snogs are coming your way xxx

Hello,

As Foggy has just told you, I’m hosting a May 12 event this year from the comfort of Foggy HQ. Anyone that’s thinking it will be difficult and will have a big impact on my M.E, you are probably right. But, I have made it as M.E-friendly as possible and have pre-recorded a few things so I can ‘rest’ briefly during the event. But it will be a physical challenge for me personally, that makes it very fundraiser-worthy!

Is it just me? The past year has been particularly bad for fake news and misinformation about our disease and I want to do something to re-balance the situation. That’s the force that’s driving me to hold this event. I am sick and tired….and sick and tired of hearing nonsense being spouted about our disease. I’m inviting as many non-M.E peeps as I can, I think I must have asked every single human being that I know in real life, that hasn’t got the illness, to attend the fundraising awareness event! I am now asking you all to spread the word about this event to your family, friends, and work colleagues (if applicable). I have space for 300 ‘bums on seats’ and I would like to ‘fill the room’ to make my inevitable payback worthwhile.

At times over the past 15 months, I’ve been upset by the the sheer level of fake news being spread. The false information was wide-ranging from the persistently annoying term ‘chronic fatigue’ being used instead of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome to Post-Exertional Malaise being described and categorised as ‘fatigue’.  The fake news has made me doubt my own contribution to awareness-raising and educating professionals, it’s as if no-one had ever heard of M.E or that it is mostly (80%) triggered by viruses. For a few months in 2020, I felt like I was living in a parallel universe where my whole advocacy existence since 2014 was in doubt!

Taking part in previous M.E awareness months have made me very aware that upping my advocacy game for a whole month is simply not achievable with limited energy so, as with last year when I was in the first 8 weeks of Long Covid and still felt acutely sick, I am ‘only’ marking M.E awareness week and International M.E Awareness day on May 12. My week stretches from Saturday 8th May (yesterday) to Friday 14th May, there will be a few extra new bits and bobs to help spread awareness about our disease.

My May 12 talk is called ‘Patient Voices’, the title has a double meaning. I will be raising awareness from a patient perspective and I have pre-recorded interviews with a couple of patients for the event. The second meaning of patient is something that has been very clear to me since February last year, our community has been patient for a very long time, and patience is something I’m starting to run out of after seeing the speed that scientists and medics have created vaccines, learned from a standing start, and ‘doubled-down’ on research to solve a global crisis.

M.E is a global crisis, where is the urgency with our disease?

As time goes on, I am seeing increasing numbers of Long Covid patients being diagnosed with M.E, C.F.S, or M.E/C.F.S by their Doctor. We knew it would happen and I’m very weary of having the same conversation over and over as to whether Long Covid is or is not the same as M.E/C.F.S. As I tweeted earlier today –

Many LCs are, rightly or wrongly, being given M.E or CFS diagnoses. Until there is a diagnostic test that’s how it has to be if they meet criteria. Same as the rest of us…. whatever the trigger.

What upsets me the most is that as a patient community we know, prior to Covid19, most of the general public had no idea what M.E was. Most thought it was ‘just tiredness’ and many still referred to it as yuppy flu. Yet, now they have a chronic illness, a few Long Covid patients  seemingly know enough about the disease to strenuously deny having it. We know there are multiple subsets of Long Covid, M.E is thought to be the result of one of those subsets.

My May 12 event will be pure M.E awareness, we need to go back to basics and highlight what the illness has always been and what the patient experience of having it is like.

Love,

Sally and Foggy (OBVIOUSLY)

xxxxxx

In case you missed the subtly placed links –

Event info – https://www.eventbrite.co.uk/e/patient-voices-virtual-international-me-awareness-day-event-tickets-149544097421

Donate here (please) – https://www.justgiving.com/fundraising/foggy-may-12

Foggy and I hope to raise £1000 with this event and have so far raised £200. Every donation, whatever the amount, will be very gratefully received. All money is going to Cure ME for biomedical research.

The post M.E Awareness Week 2021 first appeared on ME Foggy Dog.