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.

The eagle-eyed amongst you will have seen a social media post from me yesterday saying I am stepping away from Foggy’s social media for 2 weeks. I quickly deleted the posts as I thought a blog would be a good way to explain my reasoning. So, here’s the announcement-

I’m stepping away from Foggy’s social media for two weeks.

Here’s why –

• I have been struggling to find my ‘new normal’ since having M.E and Long Covid. The added complications of vaccines and stressful social media posts that require immediate attention have meant that I have been unable to calm everything down and ‘settle’ to a new baseline. I believe a break will allow me to do that more effectively.
• The NICE guidelines review is due to be published on 20th August 2021. I can predict with 100% certainty that all sorts of nonsense will be printed about M.E and C.F.S patients courtesy of the BPS (psychologists & friends) crew between now and then. I am saving myself the stress of having to react and rebut the accusations and false claims. If I don’t see it…..
• The NICE guidance review is going to be HUGE for our community (Still doing a NICE equivalent to a rain dance…it’s not ‘in the bag’ yet). I am going to need to be as ‘settled’ and raring to go as I possibly can be so ‘self-care’ is a priority now, even more so than usual.

My body is definitely struggling with the additional ‘stuff’ that has hit it over the past 18 months. As I have said numerous times, it is hard to know if new symptoms are simply M.E symptoms that I didn’t have prior to Covid19 but have been triggered by the virus, or if it is an entirely different disease/condition – MCAS etc. Either way, there is no treatment; I know that. I have reached the point at which I have started saying ‘there is no point contacting the GP’ about my Long Covid symptoms (16 months).

My Autonomic Nervous System seems to have taken the biggest hit from Covid19. One thing I have been struck by is my temperature control issues have completely changed. Throughout my time as a M.E patient, I have felt ‘icy’ at night and needed to wear thermal socks and have 2+ blankets at night. Not any more. I haven’t worn socks to bed for months and I now only sleep with one duvet – like a ‘muggle’ does! However, I now feel hot…not cold. My ANS issues have now affected my breathing, my Long Covid clinic Respiratory physio tested for all other causes of breathing issues and said ‘there is nothing we can do to fix it, your body, your ANS, has forgotten how to breathe’. I believe this is why so many PWME have told me they also have breathing issues, whether their M.E was triggered by a respiratory virus or not.

Faulty ANS issues have also caused me to inappropriately scream and/or squeal whilst watching very slightly scary TV programmes….funny for me….annoying for my family who have narrowly avoided having heart attacks as a result!

I also have excessive thirst which has been investigated by my dentist and Drs. There are no ‘anomalies’ in my mouth and Diabetes has been ruled out. Again, no explanation other than, my body no longer recognises when I am thirsty so pushes me to drink….all the time. I am currently drinking 4 litres a day. I’ve now been told ‘drinking too much won’t kill you, just try to stop yourself from drinking too much’….cheers!

ME Foggy Dog is a social enterprise (not for profit business) and so I don’t take the decision to step away lightly. Advocacy work is always very important and I feel constant demands on my time 24/7, however – if I don’t look after myself now I may not be able to continue doing the work I do over a much longer term. Close friends (confidantes – you know who you are – thank you) within the M.E community know that I have been struggling for a while and have spoken about closing both ME Foggy Dog and Stripy Lightbulb CIC to concentrate on myself. I do the day-to-day running of both social enterprises singlehandedly. Something I was able to do, with difficulty, before Covid19 hit me but now I’m not so sure. I’m still taking it one day at a time. At the moment, both my heart and my head hate the prospect of stepping away permanently as I fully recognise the urgent need for both. However, continually banging my head against hard immovable brick walls is starting to take its toll on my personal health.

Thank you to everyone who recognises and understands that ME Foggy Dog is much more than social media posts and who support the work I do away from ‘timelines’ and ‘newsfeeds’. This is the work I will be concentrating on over the next 2 weeks. ‘Stepping away;’ from social media will simply give me much more head space and will give me the opportunity to calm everything down. Keeping everything crossed that I will find my ‘new normal’ in the near future.

Take care of yourselves and see you soon.

Love

Sally

and Foggy (OBVIOUSLY) xxxxx

p.s. Don’t forget that MEfoggydog.org is Foggy’s online home – take a look for merchandise, donating, podcasts, and our news!

The post Reset first appeared on ME Foggy Dog.