LONG COVID + ME/CFS disability LAW + Insurance + Clinics

THE SUCH FUN BAKE OFF - WITH MIRANDA HART AND JENNIE JACQUES - FOR ME/CFS AND LONG COVID.
It ends midnight today uk time !!!!! Quick , if you want to enter your photo of cake.

bake4mecfs.com

we loved watching Miranda on TV !

 

ARTICLE - THE ATLANTIC - LONG HAULERS ARE FIGHTING FOR THEIR FUTURE - BY ED YONG

This article draws parallels with LONG COVID and ME/CFS and says how poor research and harmful treatment could jeopardise the future of people with LONG COVID. Mentions the notorious PACE trial and dangers of post- exertional malaise.

here a few screenshots but much more in the article itself.

www.theatlantic.com/science/archive/2021/09/covid-19-long-haulers-pandemic-future/619941/

 

 JUST BECAUSE ...

I have thoroughly depressed myself today so I am posting this picture of a pet piglet to cheer things up a bit,  There are days when you just need to look at something lovely.

UPDATE - 9 September

Things are even more up in the air with regard to the delayed publication of NICE guidelines on ME.

Professor Gillian Leng , Chief Executive of NICE announced her retirement today 9 September . She had been the one to write e- mails stating that NICE were trying to do their best for ME Patients with the round table meeting. She sounded genuine.

Yesterday unofficial information broke on the internet ,the independent chair of the round table has been rumoured to be Dame Carol Black . If the rumour is true there are concerns with conflict of interest as she worked with people who currently oppose the guidelines being updated. The rumour says the round table meeting is due for Friday 17th.

This whole thing is such a worry, things may still turn out ok , who knows ? Not looking good though.

If things don’t pan out as hoped , It will be more vital than ever for decent biomedical research to find something , perhaps then things will change.

PHYSIO OPINION - NICE ROUND TABLE ABOUT ME GUIDELINES IS A FARCE.

Here are a few tweets from a physiotherapist regarding the delay in publication of ME guidelines by NICE.

I just want to say thank you, I wish there were more people like you.

  

BRITISH PSYCHOLOGICAL SOCIETY CAMPAIGN TO MAKE LONG COVID A PSYCHO - SOCIAL CONDITION.

This is not good news at all.

People deserve better than this, post viral illnesses need proper biomedical research and genuine medical treatments that actually help make a difference.

I think the fact that the British Psychological Society feel that they can actually screen people to predict whether they will develop LONG COVID is doing patients a disservice.

LONG COVID is not a type of behavioural problem that can be predicted by screening.

LONG COVID is the result of a virus and biological abnormalities are being discovered in emerging biomedical research.

What I don’t understand is why they wish to use their skills to deny LONG COVID as a genuine physical illness.

Why don’t they try to help in a different way instead by providing coping tips for people whose lives have changed through being chronically ill and the losses that involves.

Below is a screenshot of a LONG COVID advocacy group’s reaction to the featured campaign proposed by the British Psychological Society.



Good News ! Editing to add that it appears they have changed their mind.
This change occurred a few hours after posting this, so it is hard to keep up , but welcome news anyway.
The above tweet has subsequently been erased from the BPSOfficial twitter account and the one below has been inserted .

 




 

NEW LETTER TO NICE NOW SIGNED BY 150 EXPERTS AND 100 CHARITIES TOO FROM 19 COUNTRIES .

This public letter has been sent to the Chief Executive of NICE on Sept 15th urging them to publish the ME/CFS guidelines.
This is an update from the recent earlier letter and contains further signatories , including LONG COVID based advocates.

Here is the link to the letter and each name , their profession , and institution they represent.

www.virology.ws/2021/09/15/trial-by-error-an-updated-letter-to-the-nice-chief-executive-about-the-unpublished-me-cfs-guideline/

The signatories come from all over the world.

UK , US, Australia, New Zealand, Sweden , Norway, Greece, Netherlands, Spain, Ireland, Canada, Germany,
Pakistan, Poland, Denmark, Belgium , South Africa,
France , Austria,

The current Chief Executive of NICE Gillian Leng said in her recent retirement announcement that sadly she had lost her husband a while back ( last year ? ) and that forms part of her decision to leave NICE and the open letter also expresses condolences .

So whilst writing this post I would also like to say how sorry I am for her loss too.

NIH NEWS RELEASE 15 SEPT REGARDING NATIONWIDE LONG COVID RESEARCH ( US )

www.nih.gov/news-events/news-releases/nih-builds-large-nationwide-study-population-tens-thousands-support-research-long-term-effects-covid-19


This looks promising. Especially the tissue pathology .
This research is for LONG COVID but it has been said for a number of years within ME research that blood samples are not enough and viruses or potential latent viruses that may have been reactivated will show up in tissue samples but remain undetected in blood.

I like the idea of collecting and pooling different results together, hopefully answers will be found sooner rather than later with this method.

 

NICE HAVE CONFIRMED THAT CAROLE BLACK WILL CHAIR THE ROUNDTABLE MEETING ON OCTOBER 18 REGARDING THE DELAYED PUBLICATION OF NEW GUIDELINES FOR ME/CFS

www.nice.org.uk/news/article/update-on-the-nice-me-cfs-guideline-roundtable-discussion

The roundtable meeting due next month is very important , it will decide the fate of ME/CFS patients.

Depending on the outcome patient harm could stop or continue.

If the new guidelines are published patient harm will stop.

The new ones were snatched away hours before publication due to opposition from people with vested interests who promoted harmful treatments , based on their discredited research , and have links to organisations with vested interests such as the DWP and health insurance companies.
The new guidelines took nearly 4 years of work , they were finalised , signed off, every i was dotted , every t crossed - but then out of the blue it was stopped 9 hours before launch. 

If this were a house move , the contracts would have been signed, the furniture would be inside the removal van , the keys exchanged , the finances settled , only then to find the owners in one house have decided to squat , blockaded the doors and windows and refuse to move despite the legal obligation. 


In fact a petition has now reached over 20,000 signatures asking for immediate publication of the new guidelines.

NICE said in a previous statement that the Chair person for this roundtable meeting would be independent.

but instead of honouring their word they have confirmed today to have chosen Carole Black as Chair ( who has a huge and I mean HUGE conflict of interest )

The rumours were right after all.

See below for similarities between the side with vested interests opposing publication and the Chair .

SIDE OPPOSING PUBLICATION OF NEW GUIDELINES ( VESTED INTERESTS )
Supports biopsychosocial approach
Works for DWP - Dept Of Work And Pensions
Members of Royal College of Physicians
PACE trial authors ( whose research and treatment has been discredited and removed from new guidelines )


CHAIR CAROLE BLACK - ( CLOSELY ALIGNED WITH VESTED INTERESTS )
Supports biosychosocial approach
Worked for DWP - Dept Of Work And Pensions
Former president of Royal College of Physicians
Colleague of one of the PACE trial authors ( whose research has been discredited and removed as above )

en.m.wikipedia.org/wiki/Carol_M._Black

Patient organisations that will be attending the roundtable have been asked to sign confidentiality agreements.

A gagging clause if you will.

The fear is that the new guidelines will be altered and the discredited treatments that were removed in the new version could be reintroduced and added back again causing continued patient harm.

So Is the choice of Chair person stacked so that the guidelines will not be published in their current form ,effectively caving in to pressure from vested interests so they get their way ( again )
or
a plan by NICE to ensure that if the guidelines go ahead as hoped the opposition will be unable to complain about unfairness in choice of Chair person ?

Time will tell.

 

 BISCUITS

Here is some biscuit humour from a parody spoof twitter account of one of the PACE trial authors. The jokes refer to NICE guidelines and CBT cognitive behavioural therapy and GET graded exercise therapy from the PACE trial.

The NICE biscuit is one those old fashioned classic biscuits that has been around for years and years - right up there with custard creams and bourbons.

Having now explained it all , it probably won’t be funny at all , but they made me smile when I saw them , need something to lighten the dark times !

 

 
jenjie,

Thank you for saying all this , it means a lot.

I hadn’t realised that you went through Long Covid yourself, I am so glad that things are beginning to improve for you .

You are such a kind person and have been through so much yourself with loss .

I have been very moved to see the help that you have given to people struggling with their own loss at the moment and being there for them, it must bring back such hard memories for you with your husband.

In a world where I have become disillusioned , people such as yourself are like a spark of light . Your goodness shines through.

I am so impressed that you are there for others despite your own difficult circumstances. I think you are an inspiration.

I hope that your health continues upward.

Sending hugs and lots of good wishes.

 
jenjie ,

For us, it has affected a member of the family for many years who came down with it after flu.

Instead of resting afterwards they tried to carry on as normal, ignoring symptoms of getting worse just thinking it would pass if they continued to push through.
They went downhill in months.

This is the point where it would have been good to have known about post exertional malaise and things could have turned out very differently. If we could go back in time and make different decisions we would.

I think that is why the ME community are trying to help the Long Covid community because what happens in the early days can be crucial to making things worse or better.

For our family things became severe and ended up bedridden ,sometimes in complete darkness due to intense pain with noise and light. There were months with lack of speech or stuttering and muddled words followed by years unable read or write .

Even chewing was impossible and feeding liquid food through a straw was necessary , graduating to pureed food and a spoon before returning to solid food.

There was support needed to get from bed to wheelchair , even a cervical collar was needed to help keep them from flopping like a rag doll.

Over time it has fluctuated , there have been better years where they have been able to walk across a room, or spend time in the garden or even being on holiday. Some good days each week were possible but then followed by bad patches and crashes.

Reading and writing gradually returned but not at the same level as before and worsening especially when tired . Being able to eat meals without assistance and managing the bathroom too came back during the better years

There have also been prolonged relapses with years of being bedridden once more and requiring a wheelchair indoors, although not as extremely severe as the early days , touch wood .

I wish we knew then what we know now and just had good old fashioned rest and convalescence in the very beginning giving the best opportunity to recover.

Post exertional malaise (or post exertional symptom exacerbation )was not understood back then. There were not even the words to describe it or name it. Knowing how it works and the delayed reaction can help make it easier to live within your energy threshold and minimise symptoms.
It sounds like you have got the hang of it a lot quicker than we did and that should make a big difference.

From what I can gather the strongest chance of recovery happens within the first two years , but there is still a good chance of a better quality of life after that . It does not become severe for everyone which affects around 25% .

I was looking at a twitter account of Dr Ian Frayling from Wales who had Long Covid and was in a bad way for many months but he said during that time he learned about ME and did not push himself - the good news is he recently climbed up a mountain in Wales because he was feeling so much better and on the mend.
I have a feeling he managed this about a year after coming down with Long Covid but I am not 100% sure. He has been advocate for both Long Covid and ME along the way.

The World Health Organisation are now providing an online leaflet warning people with Long Covid who experience post exertional malaise not to exercise , so it is getting recognised.

These are things we have learned through the years and wish we had known about sooner because I think things would have been less severe -

Remember that baselines ( how well or not you feel upon waking up )can vary from day to day and that will mean things will differ in what can be achieved that particular day.

It is about going with the flow and realising that there will be different thresholds before post exertional malaise can kick in.
One month a person might not be able to walk much around the house because their starting baseline is low and they feel very unwell when they wake up and post exertional malaise kicks in very quickly .
Another month their baseline might be higher and they feel less unwell when they wake up and they find they can walk around the house for longer before post exertional malaise kicks in.

It is really complicated to explain but what happens is that people with ME eventually get a feel for what their baseline is and through experience can determine what they can and cant do that day.

It is trial and error and becoming familiar in building up a personal picture of how things work in your own body.

Sometimes progress can be two steps forward and one step back . Recovery can be like snakes and ladders .

There is a delayed reaction so activities on a Monday might not show increased symptoms until Wednesday , which means knowing when to stop is not always easy.

Never ever push through when you are feeling ill , stop and rest.

Post exertional malaise can be caused through different means -
physical activity , mental activity like reading or using a computer, and emotional activity like stress.

Lying down can help with clearer thinking .

If there is an easier less labour intensive method of doing something - it makes sense to use it.

Like you say it is a frightening thing to go through with all the not knowing but learning how it works is half the battle , giving your body the rest and time it needs and treating like a long convalescence can make such a difference.

Research is finding out changes in body - systems for Long Covid and ME , so hopefully drugs can be targeted in the future.

Anyway, it sounds like things are going in the right direction for you and that is really encouraging.

Carry on taking good care of yourself , rest as much as you need to and give yourself the best chance for a full recovery.

edited to add , just found a brilliant information poster from World Physio which explains things clearer than I have and I have put it in the post next but one down.

LONG COVID ADVICE FROM WORLD PHYSIO - international congress 8 September.

Totally Wonderful and Very Useful !

Brilliant stuff - here is an information poster from World Physio regarding warnings about post exertional symptom exacerbation / malaise for people with LONG COVID.

There are several other information posters available regarding different areas of LONG COVID which can be found in the link below .

world.physio/toolkit/world-pt-day-2021-information-sheets-english

 
just to add the advice given in this poster to pace is good , very very good in fact , and should not to be confused with something called the PACE trial which has been harmful

jenjie , this is the poster I mentioned earlier.

DOCTORS IN IRELAND URGED TO LOOK OUT FOR CHRONIC FATIGUE SYNDROME IN LONG COVID PATIENTS.

A news article warning LONG COVID clinics GP’s to look for ME/CFS in their LONG COVID patients as the wrong exercise treatment can cause harm.


www.independent.ie/world-news/coronavirus/doctors-urged-to-look-out-for-chronic-fatigue-syndrome-in-long-covid-patients-40891359.html

Here are a couple of screenshots , more information in the above link.