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

THE TIMES NEWSPAPER - BREAKING NEWS.

(Well sort of , topic already briefly covered around 10 hours ago in above post)

Sean O’Neill senior writer at The Times newspaper has just had an article published. It is behind a paywall but some of the article can be seen on the third screenshot where there is a snippet that someone else has just put on twitter.
The Times article talks about the resignations from the NICE guideline committee that I included in the post above and the implications for Long Covid. The first 2 screenshots are of Sean O’Neill’s twitter.






Edited to add - really happy about the news 

TRANSPARENCY - THE LACK OF IT.

As a family with ME without treatment ,cure or medical care what do you do ?
You look for answers. We began by searching to see if there were any alternative treatments that could possibly help and tried all sorts of rubbish supplements out of desperation , only to find the things that claim to work sadly made no difference. Hopes got dashed .

(Some families with Long Covid may find themselves in a similar situation.)

That search then lead from one thing to another - like medical research and clinical trials and expanding to parliamentary debates and questions raised in government. All in the hope of trying to understand what was going on and if there would be light at the end of tunnel. Unfortunately it was as clear as mud.

CLASSIFIED DOCUMENTS + POTENTIAL FUTURE IMPLICATION FOR LONG COVID
One day , a number of years ago , I noticed a comment under a newspaper article talking of so called “secret files” on ME. I immediately dismissed it as nonsense.
I was bored one afternoon and out of curiosity I took a look to see if they were actually files at Kew , where the Public Record Office is.

There are two files about ME. There are also files about every other illness under the sun, so having a classified document concerned with illness is normal and common and nothing out of the ordinary.
The difference is though is for all the other illnesses that I looked at to compare they all had a classification period of 30 years, which is standard.

Except for the files on ME which have a classification period of a highly unusual length of time , a whopping 78 years each. One is from the Medical Research Council and the other is from the Department of Work and Pensions who partially funded the infamous PACE Trial. The specific group of psychosocial researchers that are currently involved in LONG COVID were also involved in the PACE trial and are known to have a conflict of interest. This might be something worth knowing for people new to LONG COVID
I will never know what is contained in these files because with that length of time until release I will either be no longer be alive to read them or be really really really old !

The question regarding the unusual length of time of classifiaction was raised in parliament by House of Lords member the Countess of Mar. The reply given explained it was something to do with the Data Protection Act ( I thought the reply was unsatisfactory as the Act affects all illnesses equally and still does not explain the discrepancy in classification times)
meassociation.org.uk/2011/01/parliamentary-question-sealed-mecfs-records-held-in-the-national-archives-21-january-2011/

 

 


On a personal note I have to admit that I when I first found out about these files I decided to discontinue my search for answers for a while as I found the whole thing rather off putting and unsettling.

The infamous PACE trial data , formerly held by Queen Mary University has still not been fully released (a tribunal ordered the release of partial information following a Freedom of Information by request from Alem Matthees). It cost over £250,000 of public money, which could have been saved if they had handed it over as they should have in the first place.

informationrights.decisions.tribunals.gov.uk/DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF




In a recent development the remaining data is now held at Vivli who claim transparency , but I have read others saying that they are more like gatekeepers. Time will tell. Meanwhile a joint application involving researchers from different specialities is being proposed to see if together they can obtain data release.
The PACE trial itself was paid for by public money making it suitable for public sharing rather than hiding.

vivli.org

On a personal note, going back to the topic of the classified files.
These days I am more relaxed about them, I have decided not to take it too seriously, and just chalk it up to all the other weird things that happen in the world of ME .Now it just brings back fond memories of watching The X Files , and thinking of shady characters in dark corners , smoking a cigarette !

 

NEURO- PATHOLOGY AND POST MORTEM TISSUE BANK
As a family we are stuck. We don’t know what else to do other than try and keep abreast of developments and donate towards biomedical research. I have gone through researching things that I never ever imagined I would.
I have often found myself in tears , looking at brief details of specialist neuro-pathology findings from Addenbrookes Hospital in Cambridge showing dorsal root ganglionitis from people that have died from ME. Other families with ME including the lovely Kara Jane , a young women with ME are trying to raise money for a dedicated post mortem tissue bank by singing and recording an album.

karajanesings.com

On a personal note , when I first started to search for answers I just used to sob, I am not cut out for this sort of thing. I had to somehow pull myself together and put on my “research hat” in order to continue. I am not normally religious but when reading about people with ME who have died , I do say a little prayer wishing them peace and how sorry I am for everything they have gone through. I can not distance myself from the medical / scientific findings from autopsies. They are all people.
I wish I did not have to think about things like this , I would much prefer to spend my time in the happier world of crafting and hedgehogs.
So many families with ME have been forced into the wilderness and struggle to understand why and search for answers to try and find a way back.

POTENTIAL FUTURE PITFALLS
Even if the new NICE guidelines come through as hoped there is still room for caution. One way that the Psychosocial based group of Doctors can circumnavigate them is to provide an alternative diagnosis . Labels to watch out for are - MUS Medically Unexplained Symptoms , PPS Persistent Physically Unexplained Symptoms, PP Perplexing Physical Symptoms , BDS Bodily Distress Syndrome, FND Functional Neurological Disorder.

IF ONLY ....
If only things had taken a different turn in the 1980’s .
There was a fork in the road, one was leading towards biomedical research and the other towards psychosocial research.
The wrong fork was taken with the misleading ,patient harming low quality , psychosocial research.
They have dominated the field and stifled biomedical research . Who knows if the biomedical fork had been taken instead there might now be a cure for ME that could also help LONG COVID

GOING FORWARD
I hope to continue to take an interest in biomedical research particularly research that combines ME and Long Covid and the way they are intertwined.

Can you imagine on August 18 any other group of seriously ill patients that would be so happy and relieved to receive national health guidelines that still offer NO TREATMENT OR CURE. The relief coming from absence of harm, and the happiness coming from recognition that has been denied for decades. It comes to something when never have so many people been pleased with so little.

The harm that hundreds and thousands of people with ME have endured can never be underestimated. People with LONG COVID deserve not to go through the same thing.

So for our family ,we wait, we count the days until Aug 18, we hope that it might just be the start of a fresh new beginning.

 

LAWYERS ADVISE ON DISABILITY INSURANCE - US ( PIECES OF USEFUL ADVICE  COULD BE USED FOR OTHER COUNTRIES TOO )

This gives practical helpful information and advice if you find yourself needing support especially if you have been denied it. They are on the side of the patients.
There is a reason why this is very important. It is because of the disabling effects of post - exertional malaise and how rest is essential to any hope of recovery and stabilisation of the illness.
When people are denied sick leave, or have to leave their jobs through ill health , they will need support.
I know of a local man in his forties who was forced to stop working and move back in with his elderly parents to receive care as he lost his home and was too ill to look after himself.

This presentation includes details of a special test that provides objective evidence called CPET cardio - pulmonary exercise test. Fatigue is often subjective and based on a person’s word only however this test provides medical evidence that can actually be measured and compared.
The point to emphasise here is that it will require more than one test on different days. This is because differences will show up more on the second test due to post exertional malaise. This is a core defining symptom of ME CFS chronic fatigue syndrome and some types of LONG COVID


This is a joint presentation by The Workwell Foundation and Kantor Law, who specialise in ME also known as Chronic Fatigue Syndrome and have now expanded to include LONG COVID

www.kantorlaw.net

There is a choice of slide presentation or webinar
It links LONG COVID to ME

The link below will take you to the slide presentation -

documentcloud.adobe.com/link/review?uri=urn:aaid:scds:US:5eb66214-3942-42c7-843f-996cdb2be7a8#pageNum=1




 
 
 




It covers
*Investigative medical test called CPET (cardio pulmonary exercise testing )
*How repeat testing on the second day can demonstrate post exertional malaise
*How this test provides objective evidence which can be used to support any health claim
*How this can also be used for LONG COVID patients
*what to expect with long term disability claims
*2 legal frameworks ERISA vs NON ERISA ( employment or not)
*Various things you need to do to support your claim
*Pitfalls to avoid.

 



I have been aware of The Workwell foundation’s work for a number of years. They came to visit the UK a few years back .

workwellfoundation.org

This is their ABOUT US AND MISSION STATEMENT

Workwell Foundation exercise physiologists provide expertise to support a diagnosis, functional assessments, and treatment in the areas of ME/CFS, Fibromyalgia and other fatigue-related illnesses. We work with doctors and attorneys to provide documentation that can assist patients in obtaining disability benefits. 
We use cardiopulmonary exercise testing (CPET) to measure an individual’s ability to function in a structured work environment. CPET is considered the gold standard for objectively measuring and evaluating functional capacity and fatigue....

Workwell’s mission is to focus on research concerning the functional aspects of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to facilitate an understanding of the biological basis for fatigue and post-exertional malaise (PEM).

HOPE - WHY THINGS ARE STARTING TO CHANGE FOR THE BETTER

Some of what I have been posting in this thread has been bleak at times. It has been depressing to write and I imagine for others to read.

As a family we have forgotten how scary things can be when newly diagnosed. You just want someone to tell you that everything is going to be alright.

The whole situation with medical research and recognition of post viral illness has recently changed and turned on its head . It now means that in the future - there is hope. Real hope.

For LONG COVID there has been a staggering amount of money put towards research , hopefully that will mean answers so much more quickly

Researchers are networking with one another, in ways never seen before.

Researchers are sharing their findings on a pre-print server platform to get things out there sooner, whereas before things would normally take months awaiting peer review before being published in a medical journal.

Post viral research is undergoing a revolution , as are health policies.

 




Doctors ( the good ones )are able to advise Long Covid patients not to push themselves. This will hopefully provide some protection against longer, worser symptoms now that there is an understanding of post exertional malaise .

With time and rest ....
With recognition and biomedical research....
With huge pots of funding ....
With disability rights and social and financial support...
With better medical education....
With informed consent to say NO to damaging treatment...
With avoidance of harm....
With changes in health policy....

Recovery , treatment, or at least an improved quality of life is within reach.

For people with LONG COVID , there is a similar fork in the road that people with ME once faced. By shining a light on the dark history of ME I hope that people with LONG COVID will have a much better and brighter future ahead of them.

This next picture is a message to myself and family ( and anyone else who needs it x ) in the hope that writing all these posts will help us to move forward and leave some of the awful stuff behind.

 





 

This personal account of LONG COVID has been written by a hospital worker in the US. She has been ill with LONG COVID herself for quite a while.

She talks of her struggles with the illness , her symptoms and lack of support. She describes post exertional malaise - PEM and relapses. She mentions harmful treatment at LONG COVID clinics.

She also talks of how she learned about ME , the neglect and abuse , and the need for LONG COVID and ME communities to be allies to ensure a better future together.

Here are a few screenshots , there is much more within the article itself. ( wish I could give her a hug )

medium.com/@inkonthepage/long-covid-me-cfs-and-the-need-for-allyship-cd42308fff37




 


 





 


 


Just editing to add - the boy thrown into the pool is called Ean Proctor, Merryn and Sophia all were from the UK . ( last I heard Ean was married and ok )






 

 MEDIA COVERAGE - HOW IT CAN MAKE OR BREAK AN ILLNESS.

This is something worth considering for any LONG COVID advocates .

How an illness is portrayed in the media can have either beneficial or detrimental influences.

Here in the UK, unfortunately long Covid has sometimes been presented in some newspapers by some journalists as a psychosomatic disorder. Other times it has not.

Learning lessons from how ME / CFS has been presented in the past in the media can also be applied to Long Covid.

In the UK, ME/CFS generally has received a poor press.
Sympathetic articles normally appear in regional newspapers concerning local families who have ME.

This is in contrast to national newspapers who have generally been disparaging and demeaning towards patients, trivialising ME/CFS.
There has recently been a couple of very good , outstanding exceptions though, George Monbiot from The Guardian and Sean O’Neill from The Times .

As with any illness - attitudes count.
If an illness is trivialised and dismissed in the media then it flows out to wider society .Family ,friends, employers ,education and healthcare all take their lead from what they read in the papers and see on TV. This is especially a problem for poorly understood illnesses like ME/CFS or emerging illnesses like LONG COVID because medical education is lacking or misinformed.

It can also have a knock on effect with funding research ,
Traditionally ,the more an illness is dismissed , the fewer research grants it receives.

One of the issues is who controls the narrative.
Unfortunately, in the UK with ME/CFS ,the Science Media Centre has had a big hand in previous press releases. This is most unfortunate ,
as one the the most influential psychosocial researchers for ME/CFS was on the scientific advisory board of the Science Media Centre. News reports were extremely biased and not in the patients favour.

On Wednesday, August 18 the final version of the NICE guidelines for ME/CFS will be published. The ME community are waiting to see what the media coverage will be like.

Recent commentary from the BMJ ,British Medical Journal,
who published an article that was very biased in their assessment of the NICE guidelines committee and recent resignations, does not bode well. It noticeably omitted details that scientific evaluation by the panel and other independent scientists and researchers have shown the PACE trial to be of either very low or low quality.

This trial had a major influence on how patients with ME /CFS in the UK were treated or should I say mistreated.

The Lancet , who published the PACE trial in the first place , have refused a prior request by over a hundred scientists / researchers for an independent enquiry to be carried outside of the UK with regard to the PACE trial.

www.virology.ws/2018/08/13/trial-by-error-open-letter-to-the-lancet-version-3-0/

The question is - how will the Lancet, British Medical Journal and British Press frame their response on August 18 to the announcement of the new NICE guideline ?



For people with ME and their families , it is a question of wait and see .

Our family are counting the days to see what will happen , and not counting any chickens.....

For the LONG COVID community , it might be worth trying to seek sympathetic journalists , those who investigate rather than regurgitate. 

FINALLY RUNNING OUT OF STEAM ....
Each time I post , I think that is it , done, finished ( but then it does not last for long as I think of something else that might be useful !)

I have finally , well and truly ,totally, run out of steam now. It has taken years to find my voice and let it all out .Thank you to all the peas for allowing the space to do it and giving some replies .

I hope that some of it will be of help to people with LONG COVID .

For everyone , with any illness , thinking of you and wishing you well ...

Time for a nice cup of tea !

 

ME/CFS AND LONG COVID RESEARCH REVIEW PUBLISHED IN ONE OF THE BEST MEDICAL JOURNALS IN THE WORLD - PNAS

This is a review published in the journal called PNAS - Proceedings of the National Academy of Science. One of the highest ranking medical journals in the world. The journal has been described as prestigious.

The authors have linked previous research that ties ME / CFS and LONG COVID symptoms together and discuss things further.

I am not scientific or medical so apart from a few bits and pieces a lot of it is beyond my understanding BUT from what I can gather to get something published in PNAS is quite an honour and achievement which will hopefully mean future LONG COVID and ME/CFS research getting more respect and taken with the seriousness it deserves.

www.pnas.org/content/118/34/e2024358118

  





  




  









  

Cont from above

just read a message from David Tuller ( public health journo ) that  the Times newspaper - Sean O’Neill had broken the embargo prematurely ( a day early )and published an article this morning stating the final guidelines matched the draft version and wished CBT and GET to be withdrawn as ‘treatments’ 

Looks like the decision to pause was taken unexpectedly a few hours ago , out of the blue.
someone , somewhere has got a lot of influence to do this.

NICE DELAY CONT ...
Recently in a post I made a few days ago called ‘media coverage - how it can make or break an illness’, I talked of the Science Media Centre and how it had strong connections to the psychosocial researchers , well if you look at the bottom of the photo you will see their ‘expert reaction’ to todays news and how they are pleased the publication has been paused. It comes from the royal college of paediatrics and child health via the Science Media Centre. As I said before they do not work in patients favour.
Their statement regarding their pleasure of the situation and the pause in not publishing new guidelines I feel is cruel and wrong. The current guidelines harm.
Some children and young people have suffered terribly before they died of ME , their medical mistreatment making things worse, much , much worse.

Meanwhile , harm continues as the old guidelines stand.
The living nightmare continues....

People will continue to suffer , become more disabled and for some people they will die before their time because of medical harm.

What sort of world are we living in ? Medical ethics - where have they gone ? Why are the medical profession deliberately and knowingly hurting patients ? Knowingly here is key , there is no longer any excuse for ignorance.

Below is the joint statement by the ME charities.

The science media centre comment by royal college of paediatrics and child health at the bottom is sickening .( just to point out one of the most highly funded psychosocial researchers who makes young people with ME do CBT , GET and some trash called the lightning process is a professor of child health called Esther Crawley )

I want to put in something extra so it follows with
a screenshot about Merryn Crofts ,( bless her heart ) a young person who was prescribed CBT and GET , her mother said her illness went downhill after that ‘treatment’ and she felt it was the cause of her daughters death. Merryn’s mum’s statement was read out by an MP in one of the parliamentary debates .

  



  
























  










  

  

 NICE DELAY CONT...
AND CONNECTION WITH
WORRYING STUDY FOR CHILDREN WITH LONG COVID


I saw on a different forum , that someone has narrowed down even further the connection from the Science Media Centre comment quoting from the Royal College of Paediatrics and Child Health regarding the pause on publication of NICE guidelines for ME. At first sight the quote seems benign but there is a chilling implication underneath.

One of the member trustees of the RCPCH above is Professor Sir Terence Stephenson who is currently working with Esther Crawley on something called the CLoCK trial.
Standing for ‘children and young people with long covid’

assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/977177/Children_and_young_people_with_Long_Covid__CLoCK_.pdf

The trial funded for £1.3 million concerns children with LONG COVID. They plan use the same damaging treatment of CBT and GET on long covid kids as they have with kids with ME/CFS







  




I hope that parents will not have the wool pulled over their eyes.
I hope they do their own research and realise the dangers of CBT cognitive behavioural therapy and GET graded exercise therapy.
I doubt any parent would consent if they were presented with the facts that the treatment has shown to be harmful in 80% of patients . How , in worst cases their child could end up bedridden and tube fed before dying. I have read of children being able to walk for short distances before treatment then being wheelchair bound afterwards. The new NICE guidelines had specific instructions regarding the protection of children and said this form of ‘treatment’ with CBT and GET has to to stop due to the dangers of harm but that protection has now vanished with the ‘pause’ and NICE’S decision to delay publication.

A lot of people still have faith and trust in medical professionals probably because their own experiences have been positive.
They may have a specialist consultant , a care pathway designed to alleviate symptoms, medication or surgery that helps. They may get treated with dignity and respect. They may owe doctors their life.
That has been the case for our family for my husband’s heart health and we are so grateful because they literally saved his life.

Unless we as a family had also experienced the mistreatment of ME , I don’t think we could ever have imagined how bad things can be. It is like the difference between day and night. Instead of being cared for by the medical profession , people with ME are left with two options - mistreatment or no treatment.

There are so many kind , caring , dedicated health professionals.
They are putting themselves at risk caring for people during the pandemic too.

This is why it is hard to understand how there can be 2 sides to this coin but there is. I hope that parents will be aware that medical harm towards children does happen.

STATEMENT FROM CHARLES SHEPHERD , TODAY 18 AUGUST  ,ME ASSOCIATION - REGARDING DELAY OF PUBLICATION OF NICE GUIDELINES

 


  


  


  

THINGS GOING ON TO CHALLENGE DELAY OF NICE GUIDELINES

Things happening at the moment to challenge the delay of NICE Guidelines publication for patients with ME.


This petition has just been set up by #MEAction
Here is the link to it -
www.change.org/p/the-national-institute-for-health-and-care-excellence-publish-the-nice-me-cfs-guideline-now

 




Another petition has also been set up -

Petition link set up by Mark Harper from the Cambridge ME support group. He predicted the guidelines would be delayed in a recent newspaper article dated from Cambridge News dated 13 August. The link below goes to the online petition
www.change.org/p/national-institute-for-health-and-care-excellence-don-t-let-vested-interests-derail-the-review-of-nice-guidelines-on-me-cfs

  

(On a side note , in 2017 , it took a petition of over 15,000 ME patients to instigate the present NICE guideline review)


Letters of concern are being sent to NICE from all over the world , not just the UK -
Here is a couple -

This one is from Dr Delaney, he has been heavily involved with Long Covid and extremely supportive of ME patients.
He is a GP and chair of medical informatics and decision making , Imperial College , London.

  





This one is from Lou Corsius , his daughter has ME .
He has worked wonders in his involvement with ME in the Netherlands , ( they have had their own group of harmful researchers in Nijmegen who have since been shut down they used to collaborate with the group of harmful uk psychosocial researchers ) The Netherlands are now officially only taking a biomedical research approach to ME. Lou is MSC health sciences member of the steering committee of Zon Mw which is the Netherlands organisation of health research and development.

LETTER TO ROYAL COLLEGE OF PHYSICIANS FROM NICE EXPERT WITNESS WARNS OF OF CONSIDERABLE PATIENT HARM AND UNETHICAL PRACTICE


This is a letter from Professor Jonathan Edwards , an Emeritus Professor of Connective Tissue Disorder , UCL University College London. Professor Edwards was an expert witness appearing in front of the NICE guideline ME committee members .

The letter is to the Royal College of Physicians whose actions were involved with NICE making the decision to delay and ‘pause’ the
publication of the new ME/CFS guidelines.

The Professor warns the President of Royal College of Physicians of the potential of their actions causing
CONSIDERABLE PATIENT HARM
And
PERPETUATING UNETHICAL PRACTICE

 REPORTING HARMS

If a patient with ME or LONG COVID undergoes a treatment that turns out to make them worse , not better , there needs to be a way of recording , and officially registering harm related to a particular form of treatment.

So if patients with ME or LONG COVID experience harm from CBT and GET (cognitive behavioural therapy and graded exercise )due to post exertional malaise - report it in writing

1. To the hospital / health trust
2. The local MP , member of parliament.

By reporting it to the local MP there will an official government record and it gives an extra layer of protection just in case hospital correspondence goes astray or gets buried.

The yellow card scheme in the UK is the method of reporting an adverse reaction to medication, amongst other things.

yellowcard.mhra.gov.uk/the-yellow-card-scheme/


One of the problems in reporting harms that are non - medication related such as CBT and GET is that the yellow card scheme will not accept them. People with ME have tried to report harm but told that type of treatment is not covered in their remit.

People with ME and potentially LONG COVID who have been harmed by graded exercise and cognitive behavioural therapy GET and CBT have a problem in getting their harm officially acknowledged.

To make matters worse , the clinics that cause the harm in the first place interpret any deterioration of the patient’s health as a further symptom of delusional false illness belief, which is the premise of their so called ‘treatment’

 Freedom Of Information requests , parliamentary questions and surveys have shown that many Health Trusts have no policy in place to record harms from CBT and GET.

There needs to be a way of recording harm caused by GET and coercive CBT that results in post exertional malaise.

In his letter to NICE from Lou Corsius( in a post upthread ) he said that his daughter has been bedridden for 6 years following CBT and GET.

Proper recording of harm will help protect others and hopefully change the future.

A policy needs to be put in place as soon as possible in the UK.
I don’t know how other countries handle this.