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

 


 CHILDREN WITH LONG COVID - A UK CLINICAL TRIAL CALLED CLoCK .

This is a clinical trial which has begun to raise alarm bells for parents who have children with long Covid.

There are multiple reasons why parents should be concerned.

The CLoCK trial goes against World Health Organisation advice on LONG COVID.
Symptoms can flare up following exertion and become much worse and longer lasting and hinder or prevent recovery.
The World Health Organisation warns that people should not exercise under these conditions if they experience this.
The CLoCK trial involves telling children to exercise despite the harm it is known to cause.
(The flare up of symptoms is called PESE and stands for post exertional symptom exacerbation)

One of the researchers involved in the CLoCK trial promotes treatment that has now been established as harmful in ME/CFS which shares a similarity to LONG COVID . Such treatment has been discredited in a clinical trial called PACE which involved exercise treatment . Patient surveys showed 80% percent of patients experienced long term deterioration following exercise treatment.

This harmful treatment of graded exercise therapy GET was set to be removed from new health guidelines for ME/CFS . The new guidelines gave warnings of patient harm . Doctors were instructed to no longer prescribe exercise . Doctors were instructed to inform patients of risk of over exertion.

Unfortunately these guidelines have recently been blocked from being published thus preventing patient safety .

Parents of children with LONG COVID should be made aware some of the researchers in the CLoCK study have strong connections to one of the organisations involved in blocking the safer guidelines from being published. The organisation is the RCPCH , Royal College of Paediatrics and Child Health .

This means the old ME/CFS harmful guidelines are in still in place.
Legal action has begun to challenge this .

Here is a link to the CLoCK trial.

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

Here is a screenshot from a the above link showing they intend to use graded exercise on children with LONG COVID. More details can be found on a previous post about this subject on page 2 of this thread.

 



Here is recent tweet from a couple of days ago from a parent whose child has been involved in the CLoCK trial. The Mum reports how her daughter is too ill to stand for more than a few minutes . She queries why the questionnaire for the CLoCK trial asks if her child steals.
She says she is baffled. ( Sadly people with ME / CFS has been through this before)
The bottom tweet is regarding the CLoCK trial for children with LONG COVID and in response to a tweet about an adult ME/CFS questionnaire referral.

 



News has recently stated that one child in 20 in the UK has now been infected with Covid. In some areas it is much worse.

www.bbc.co.uk/news/health-58763845

 


Heartbreakingly some children ( bless them ) have already died . A young girl died recently following return to school last month. School children were forced to return to an unsafe environment without any safety measures in place and without masks . Unlike other countries ,vaccinations for children have been delayed in the UK . The infection rates are astronomical here and some of the highest in the world.

This link is about the sad death of Jorja Halliday aged 15 that happened recently.
www.bbc.com/news/uk-england-hampshire-58772671.amp

Sadly I expect some children will go on to develop LONG COVID .
Some children have been ill long term.

It is unethical to subject children to the harmful treatment of exercise when medical evidence and the World Health Organisation warn against it in cases where exertion makes their LONG COVID worse.

Parents with children who have LONG COVID will probably be unfamiliar with the harm done to children with ME /CFS and will naturally have good faith and trust in the medical profession.
They would probably never dream that something like graded exercise GET that is known to harm and has already been withdrawn in other countries is offered to children here without any warnings about risk.
How can parents give informed consent when such information is withheld.

The LONG COVID advice given by the World Health Organisation is not to push through and to avoid exertion as seen on page 8 . It is echoed by World Physio too. The posters below explain more about PACING , a form of energy conservation by limiting activities ( not to be confused with the harmful PACE trial )

Link to World Health Organisation leaflet advice on LONG COVID

apps.who.int/iris/bitstream/handle/10665/344472/WHO-EURO-2021-855-40590-59892-eng.pdf?sequence=1&isAllowed=y


Link to World Physio Conference on LONG COVID
world.physio/toolkit/world-pt-day-2021-information-sheets-english
World physio have a series of information sheets . Here are sheets 3 and 4

 


 

The above posters for LONG COVID specifically warn against graded exercise therapy in the box at the bottom .

 


For further information regarding the battle and legal challenges to the publication of safer ME / CFS guidelines concerning the removal of graded exercise therapy please see previous posts , there is a list of contents of posts at the beginning of page 1 on this particular thread.
Search for anything to do with NICE guidelines or Roundtable meeting.

The new guidelines were due to be published 18 August but were unexpectedly delayed due to pressure from vested interests. The vested interests wish to keep graded exercise in the guidelines despite patient harm, 
they have financial and other conflicts of interest.

A roundtable meeting with NICE ( the organisation responsible for developing and publishing the guidelines ) has been arranged fo 18 October.

This has now been subject to legal action stating that the guidelines should be published without delay. There is also a possibility a Judicial Review. The situation is ongoing.
The civil litigator is solicitor Peter Todd from Scott Moncrieff

Meanwhile Valerie Eliot Smith , a barrister from the UK has made available an embargoed copy of the new guidelines on the grounds of public interest.

A petition of over 20,000 has been handed to NICE urging them to publish without delay.

A joint letter from 150 professionals together with 100 patient support charities from 19 different countries has been sent to NICE urging for immediate publication.

Every day of delay is another day of preventable harm .

The CLoCK study involves an overlap of the same researchers and methods involved in now discredited ME /CFS research regarding graded exercise .

The removal of graded exercise is at the heart of the changes to the new guidelines on ME /CFS .

Children with LONG COVID should not have to go through the same harm that children with ME/CFS have.

 

 THE TALE OF THE PREVIOUS JUDICIAL REVIEW ON ME / CFS

Once upon a time, a long long while ago, in 2009 there was a previous judicial review about the NICE guidelines for ME / CFS.

Are you sitting comfortably ?

This real life story is told in “Orthodoxy on trial”

It is a four part medico-legal series published by Scottish Legal in 2021

Chapter 1 - The pathogenesis of a diagnosis
Chapter 2 - Dominance by Induction
Chapter 3 - Did flawed science beget flawed law ?
Chapter 4 - So long , psychogenia - but not quite yet

Written by David J Black

It covers past, current and future implications for ME/ CFS and LONG COVID.
Written in June before the ‘pause’ delaying the new safer guidelines from being published.

www.scottishlegal.com/article/orthodoxy-on-trial-the-pathogenesis-of-a-diagnosis

www.scottishlegal.com/article/orthodoxy-on-trial-ii-dominance-by-induction

scottishlegal.com/article/orthodoxy-on-trial-iii-did-flawed-science-beget-flawed-law

www.scottishlegal.com/article/orthodoxy-on-trial-iv-so-long-psychogenia-but-not-quite-yet

To cut a long story short, things did not end with a happily after.
The guidelines have harmed since 2007 and continue to harm.

Here is hoping for ....

 


A lot has changed since 2007,  the medical / scientific scandal is out of the bag .


( the previous judicial review is also covered on the ME association website , just put judicial review in the search box and look for articles dated 2007 to 2009 )

meassociation.org.uk

 CARING FOR THE PATIENT WITH SEVERE OR VERY SEVERE MYALGIC ENCEPHALOMYELITIS / CHRONIC FATIGUE SYNDROME

www.mdpi.com/2227-9032/9/10/1331/htm

This is a brand new medical paper on how to care for patients with extremely severe ME / CFS.

It was published yesterday and can be read in full from the link above . It contains so much more useful information than just the small parts I have covered here. It includes details of patient neglect , carer mistreatment , and poor medical understanding and harm. It also offers new insight and compassion together with practical advice and treatment suggestions.

Here are some screenshots -

  











OUR FAMILY’S EXPERIENCE OF THIS VERY SEVERE PHASE

This is one of the hardest things I have written so I am trying to get through it without crying and getting emotional. Yep , in tears already.

The thing is when going through it you never know if it will last forever , or a few years.

The extremely severe stage for our family lasted up to 2 years and involved being completely bedridden unable to tolerate noise or light or touch, unable to chew or speak and in so much pain.

The multiple years following on from that thankfully have been less severe and more moderate and therefore more bearable.

It can be hard to find the right words to describe some of the symptoms but we have pulled together to make some short notes about them as best we can.

Describing pain from touch -
At best feeling bruised
At worst feeling like skin has been turned inside out and is raw
(Some people experience such pain that a bed frame to stop the sheets touching their body is required)
Washing and bathing had to be rationed to when pain was less.
Even having a hug or cuddle could not be done for a year or so.

Describing pain from light -
At best uncomfortable , requiring a shady room with sheers or nets at the window to give a more diffuse light for a year or so.
At worst excruciating sore raw brain pain requiring a completely darkened room with black out curtains and no natural or artificial light at all . This was so hard and lasted for 9 months.

Describing pain from noise -
At best uncomfortable
At worst excruciating sore raw brain pain
even something like lemonade bubbles fizzing in a glass next to the bed caused intolerable pain.
Household appliances like vacuum cleaners or washing machine or fans could not be used. ( even the lawn mower outdoors )
Voices were short whispers.
We had to shut windows tight to protect from outdoor noise like cars , dogs barking, children playing etc
No TV or radio or music
Foam ear plugs were required to lessen pain from sound.
This lasted for around 9 months too at it’s worst.

Describing Loss of speech -
At times similar to a brain injury and unable to speak.
We had to guess whether they were pain from noise , light , or touch and remedy things if possible.
Other things like thirst , hunger, feeling too hot or cold or needing the toilet also had to be guessed.

Describing sensitivity to smell -
At best overpowering and uncomfortable
At worst causing illness to worsen with dizziness and sickness
We had / have to avoid all scented products like perfume , hand cream, soap, shampoo etc .
No air fresheners or scented candles.
We use unscented washing powder and fabric conditioner.
Bicarbonate of soda can be used instead of washing powder.
Avoiding scented household cleaning products , substituting for bicarbonate of soda instead.
Paint, varnish, glue or new furniture fumes also had to be avoided.

Problems with eating -
We had to use liquid food through a straw due to inability to chew. We used Complan as a liquid meal replacement.
When things improved slightly we used tinned invalid food bought from the chemist which could be given on a spoon.

This very severe phase of ME was terrible ( and most likely preventable)

Our family did not have the knowledge at the time of how post viral illness can develop to become a very severe form of ME due to post - exertional malaise .

If we could turn back time and do things differently we would.

If only we knew that pushing through and not resting enough could cause this .We may have avoided the years we endured at this level of severity which was a living nightmare.

The educated message these days is STOP - REST - PACE
Pacing being used as a form of energy conservation by limiting activities and stopping before symptoms worsen (not to be confused with the harmful clinical trial called PACE which involved graded exercise and subsequent deterioration of health producing more severe symptoms )

Unfortunately there are still harmful treatments being offered such as graded exercise so be aware of the dangers . Be very aware.

Things are changing and medical understanding and guidance is improving such as in this medical paper but in some areas it still remains harmful and outdated.

There is a UK charity dedicated specifically to people who experience severe ME called the 25% group. The name comes from the prevalence of extremely severe ME which can affect around 25% of patients.

25megroup.org

 Hi jenjie

It is about us and what we have been through.

That is why I want to help protect other people from going through the same thing.

With care , you can avoid this and have much better health over time.

25% of people go on to develop severe ME which means 75% do not , so the odds are the majority of people won’t get this bad.

It is normal to have relapses after exertion which can last for days weeks or months then return to baseline ill.

Recovery or significant improvement still happens despite ups and downs of relapses along the way.

By next year , you could be feeling fighting fit again and all this will be behind you.

The main thing is to try and avoid a longer term , more severe phase.

Make changes wherever possible if you can to minimise exertion .

I am so sorry for worrying you but the thing to remember is that it can be prevented and most people won’t get this bad anyway.

Forewarned is forearmed .

edited , I just read your post again and I am so glad that you have gotten through this and your worries are in the past now.

Thanks so much jenjie,

fingers crossed x

  


 CORRESPONDENCE BETWEEN NICE AND LOU CORSIUS FROM THE NETHERLANDS REGARDING DELAY OF THE PUBLICATION OF NEW NICE GUIDELINES ON ME / CFS

Lou Corsius has left a link on his twitter account to this reply he received on 5 Oct from NICE . He is a member of the Dutch health steering committee called ZonMw.

His daughter has ME and his work has helped to steer the Netherlands into a more biomedical approach towards ME /CFS

I have screenshotted the letter at the end of this post.
Here is the tweet.

 


May be I am just impatient at the moment but it feels like there is a mystery to solve.

Many countries around the world are on the edge of their seats , just are people with ME in the UK waiting to see what happens next.

The situation regarding the NICE delay is odd and unexpected .
It should never have happened. It made national news .

Questions are asked , answers evaded , secrets abound with confidentiality agreements , developments are illogical and choices peculiar ......not to mention embargoed documents released on the grounds of public interest.

Currently some of these posts regarding correspondence won’t make sense individually because the situation is unfolding as we go along. Once stitched together as a whole hopefully they will make more sense in due course. Perhaps.

I thought it would be useful to include things like this piece of correspondance because it helps to build up pieces of a puzzle to try and work out what is going on and why .

Of course if things were more transparent and open I would not need to do this.

So if I post some things that do not seem relevant , consider them as potential clues towards hopefully solving a mystery...

... Or me just trying to pass the time second guessing the outcome because I am finding the wait for answers hard going.

There is a lot riding on these guidelines , the new one’s , once published could reduce patient harm and mistreatment.

So long as vested interests do not get the chance to change them back to how they were, and that is the worry.







Edited to add -
I now regret describing some of these posts as initially appearing irrelevant , they are not, in fact they are the complete opposite. Our family are desperately looking for signs that this living nightmare will end as are other families.
This scrutiny is born of fear, details matter.

 UPDATE ON LEGAL BATTLE WITH NICE DATED 8 OCTOBER
REGARDING DELAY OF PUBLICATION OF NEW SAFER GUIDELINES ON ME / CFS

Peter Todd , solicitor from Scott Moncrieff has announced on twitter today that his claimant has been granted legal aid.
Then he says he is preparing paperwork for the High Court, with QC ( Queen’s Counsel ) Ian Wise from Monckton.

This legal action is about the delay of the publication of new safer health guidelines on ME/CFS by NICE. Previous posts somewhere upthread have more details. It is about protecting patients from further continued harm from graded exercise which causes post exertional malaise and worsens ME / CFS.

Here are some screenshots of the tweets from Peter Todd , Solicitor and some information about QC Ian Wise.

I am glad to say that I am beginning to get a cautious spark of hope about this news ( but not counting any chickens just yet )

Our family is wishing all 3 the best of luck and are very grateful for all they are doing.

 

MEDIA COVERAGE OF LEGAL BATTLE WITH NICE REGARDING DELAY OF PUBLICATION OF ME / CFS GUIDELINES -
NEWS COVERED IN THE i , PUBLISHED 9 OCTOBER
“ME PATIENT GOES TO COURT IN ROW OVER EXERCISE THERAPY FOR CHRONIC FATIGUE SYNDROME”


inews.co.uk/news/health/me-patient-court-row-exercise-therapy-chronic-fatigue-1239380

Oooh ! This is exciting ! It has made the news !

Several previous posts about this subject of this legal battle concerning the delay “pause” on the publication on NICE guidelines on ME / CFS can be found somewhere close by upthread, including legal correspondence.
I have added the details below the article


Here it is ! 







These posts are all on page 5 of this thread. Here is a quick summary but the posts themselves contain much more info including copies of legal correspondence

Posted October 2
 LEGAL ACTION HAS STARTED -JUDICIAL REVIEW AGAINST NICE HAS BEGUN IT’S FIRST STEPS.
on 1 October a solicitor and civil litigator Peter Todd announced he has sent a legal letter to NICE regarding the delay of the publication of NICE guidelines on ME/CFS with a view to High Court intervention if necessary and judicial review.

Posted October 5
 COPY OF LEGAL LETTER TO NICE FROM PETER TODD OF SCOTT MONCRIEFF AND ASSOCIATES REGARDING DELAY OF PUBLICATION OF NICE GUIDELINES ON ME / CFS 2021
Copy of redacted correspondence , edited update of 6 october now included.

Posted October 6
 COPY OF LEGAL LETTER TO NICE FROM PETER TODD OF SCOTT MONCRIEFF AND ASSOCIATES REGARDING DELAY OF PUBLICATION OF NICE GUIDELINES ON ME / CFS 2021
Copy of redacted correspondence , edited update of 6 october now included.

Posted October 7
FURTHER UPDATE WITH LEGAL CORRESPONDENCE REGARDING DELAY IN PUBLISHING NICE GUIDELINES ON ME / CFS
INVOLVING PETER TODD FROM SCOTT MONCRIEFF AND SOLICITORS REPRESENTING NICE CALLED DAC BEACHCROFT
Dated 6 and 7 October

Posted October 8
UPDATE ON LEGAL BATTLE WITH NICE DATED 8 OCTOBER
REGARDING DELAY OF PUBLICATION OF NEW SAFER GUIDELINES ON ME / CFS
Peter Todd , solicitor from Scott Moncrieff has announced on twitter today that his claimant has been granted legal aid.
Then he says he is preparing paperwork for the High Court, with QC ( Queen’s Counsel ) Ian Wise from Monckton.

 WHAT MAKES GRADED EXERCISE SO HARMFUL TO PEOPLE WITH ME / CFS.

As today’s media coverage shows (posted immediately above ) concerns are being raised over the harm of graded exercise for people with ME /CFS.

Our family has personal experience of living with ME/CFS and it struck me that if we were in most people’s shoes and not familiar with it , we would struggle to understand why graded exercise is harmful . It would not make a whole lot of sense.

In an earlier post I likened people with ME / CFS to living with a faulty battery, that if over used would be unable to recharge and become irreparable.

Here is some medical research which sheds a bit more light on this
from the University of Bergen in Norway. ( Other researchers have also found medical evidence of other things that abnormally affect the energy process in ME/CFS too. It is still early days )

medicalxpress.com/news/2021-08-myalgic-encephalopathy-cellular-energy-strain.html

 







People with ME /CFS have found out the hard way that graded exercise harms.
Surveys have shown over 80% of people have experienced worsened symptoms following graded exercise treatment.

It is not safe, it is not effective, and causes harm by potentially making symptoms much more severe .

For some it has led to the point of requiring 24/7 care whilst bedridden for decades. New health guidelines recognised this and as a result dropped graded exercise due to patient harm, but these new guidelines have been prevented from being published at the last minute which is why this matter is being covered in the national news at the moment.

Patients with ME/CFS have paid a very heavy price through medical mistreatment. They are still ill, still paying that price, it does not go away .

For some the harm will be permanent.

It is hard to explain or find the right words but for Doctors to suggest Graded exercise for ME / CFS is like -

Suggesting only eating sugar for diabetes
Or
Suggesting continuous cigarette smoking for Lung Cancer

The sooner it stops the better.

 


 HOUSE OF LORDS TODAY - QUESTION ABOUT DELAY OF NICE GUIDELINES ON ME / CFS

www.parliamentlive.tv/Event/Index/2aaa4707-dc62-46e9-8d33-2d5f8186e19e


Today 12 October, Baroness Thornton asked a couple of excellent questions in the House of Lords about the delay in NICE guidelines on ME/CFS.

This particular segment can be watched on the parliament TV link above, it can be found starting at the timeline of around 14.48 and lasts about 3 minutes. See above picture. ( I was wrong , please see edited section at bottom of post )

Baroness Thornton asked why the guidelines on ME/CFS had not been published immediately and whether medical vested interests put pressure on NICE to continue with GET graded exercise which has left one of her constituent’s daughter bedbound.
She also asked if LONG COVID was a factor in the decision to delay.

Lord Kamall replied something along the lines of......

( my fed up version as It sounded to me )

.... Medical professionals could not agree ....
.... more excuses ....
.... round table ....
.... waffle ....
.... more excuses ....
.... usual clap trap ....
.... more excuses ....


It appears that Lord Kamall is new to the job , and I am guessing that what he said may have been briefed for him in advance by someone else.

Not a good response from whoever composed it.

Big groan and massive sigh from me !

I now need a few chocolate and hazelnut biscuits to cheer myself up.

 


Edited to add -

I have missed out a lot of important stuff.

It lasts longer than the 3 minutes I originally thought and continues with questions from -

Lord Bethell regarding LONG COVID and how far behind ME is with health equality.

Baroness Finlay who happens to be the vice chair on the ME guideline Committee ,asks whether he will ensure appropriate medical services for people with ME and documentation of harm as well as benefits for people with ME. She also emphasised the point that consensus had already been reached by committee over the past 3 years.
Lord Kamall said she should write to him as he is new at the job then he will ask advice.

Baroness Scott of Needham Market asks whether he accepts that the prevailing view that ME is psychological and how that it is causing untold harm to young people who are forced to accept treatments that are damaging to them, and parents who were sometimes accused of abuse . She continues by saying taking time to reach consensus is one thing but please will the minister be aware there is a huge cost to this.
Lord Kamall replies that it is important to reach consensus but if delays continue to write to him.

Baroness Ritchie asks what were the issues raised prepublication that caused the guidelines to be paused.
He replies that GET graded exercise was the cause of the pause in publication due to it’s deletion, and that some said it was helpful !!!!

Baroness Cumberlege says patients have been been dismissed , ignored and not believed , majority of whom are women , she then is asking for assurance that patients will be listened to and not treated in an appalling manner.
He replies with thanks , and says health services should acknowledge when things go wrong and that he will champion patients.

END


All of this should be available to read as an official written transcript called HANSARD which should be published tomorrow I think.

I have been thinking a bit more about things and what has happened has been very important today because
all of these excellent questions and points of concern are now officially recorded and can potentially come in useful for any future public inquiry or judicial review.

 

 This is similar to my expression at the moment


 NICE RELEASES AGENDA FOR UPCOMING ROUNDTABLE MEETING ON OCTOBER 18 REGARDING DELAY OF PUBLICATION OF NEW ME / CFS GUIDELINES.

Oh such joy !

( not really )

Yesterday NICE released the agenda for the upcoming roundtable meeting arranged for 18 October.

Talking of the agenda, something else happened yesterday , Lord Kamall said in the House of Lords that the deletion of graded exercise from the new guidelines was the cause of the delay in publishing them . He also said this was due to medical disagreement and the reason behind the roundtable being arranged.

He continued by saying that the purpose of the roundtable was to reach consensus. (However his words contradict the earlier statement from NICE who previously announced in August/September that the roundtable meeting would be about implementing the new guidelines as they stood)

The goalposts appear to be moving .

I felt that this was a concerning moment because it reinforces fears that graded exercise could be reintroduced to the new guideline.
His words can be seen in a written official transcript called Hansard (dated 12 October )
The link for this is in the previous post immediately above.

The conversation continued with Baroness Finlay pointing out to Lord Kamall ,that the consensus he referred to had already been reached . It took place over a 3 year period when she served as vice chair on the guideline committee of the new NICE guidelines for ME / CFS . Baroness Finlay then asked him to ensure that harm as well as benefit should be recorded in ME/CFS treatment.

This was also a concerning moment as it left me wondering if this could be another indication of graded exercise being reintroduced to new guideline during the roundtable meeting. Harm is a well known consequence of graded exercise for people with ME due to post exertional malaise.

This roundtable meeting has arisen because of an unexpected and unprecedented action that took place on 17 August . The vested interests who profit from graded exercise managed to “persuade” NICE into unlawfully delaying publication of new safer guidelines that had removed graded exercise due to patient harm .
The guidelines were due to be published on 18 August.

The vested interests who will be attending the roundtable meeting say that because graded exercise helps some people then it should stay and not be removed.

cough - conflict of interest - cough

The timing of their action is odd because the removal of graded exercise was done and dusted , a decision that was already made, agreed upon and signed off.
They staged a last minute coup .

Did I mention that the vested interests involve graded exercise in the billion pound / dollar health insurance industry to support claimant denials , in addition to the Dept Of Work and Pensions to help support benefit denials ?
They even plan to expand their graded exercise empire into LONG COVID .
Did I also mention their clinical trial of graded exercise as a curative treatment for ME / CFS has been officially discredited.

IN FACT ....

89% of people with ME are harmed from graded exercise due to post exertional malaise also described as post exertional symptom exacerbation .
Biomedical evidence points to impaired energy metabolism in people with ME / CFS .
Some become permanently bedridden , others have sadly died.

WHICH IS WHY ...

Yesterday an updated petition of over 20,000 signatures was handed over to NICE
In addition to
a recent open letter signed by 240 professionals and 100
charities from 19 different countries.
In addition to
A current legal battle requesting High Court intervention

ALL ASKING THE SAME THING FROM NICE WHICH IS ...

to immediately publish the new safer guideline on ME/CFS without delay which includes the removal of graded exercise to stop ongoing patient harm

SO ....

Will patient safety win the day at the roundtable ?

OR ....

Will conflict of interest reign at the roundtable ?

OR ....

Will the High Court intervene in the current legal battle by publishing the unaltered guidelines prior to the roundtable ?

This subject of the delay of publication has been covered in more detail in previous posts upthread dating from 17 August onwards.

There is also a list of contents on the first post on page 1 of the subjects I have posted about and which pages they can be found on.

Previous posts include more detail on the conflict of interest and the associated clinical trial called PACE which has now been discredited.

Here is a screenshot and link to the meeting agenda for the roundtable,

www.nice.org.uk/news/article/nice-releases-further-details-of-me-cfs-roundtable-meeting?utm_campaign=me/cfsroundtableupdate12102021&utm_medium=social&utm_source=twitter

 BLOOMBERG LAW ARTICLE OCTOBER 14
“LONG COVID DOUBLES BURDEN OF MYSTERY ILLNESS FEW DOCTORS TREAT “


An article discussing LONG COVID and ME / CFS and healthcare inadequacies .

news.bloomberglaw.com/coronavirus/long-covid-doubles-burden-of-mystery-illness-few-doctors-treat

A few screenshots , more info in link above to article.

 

 UPDATE ON LEGAL BATTLE WITH NICE WITH REGARD TO DELAY IN PUBLISHING NEW GUIDELINES ON ME / CFS
Dated 15 OCTOBER

Peter Todd, the solicitor acting on behalf of an ME patient has announced a slight change of plan on twitter an hour or so ago.

It now appears , instead of presenting the claim today , it will be delayed until after the roundtable meeting taking place on 18 October.

I am just guessing this may be as a result of the more detailed agenda for the roundtable that came out yesterday.

The details of the agenda are a concern . As you can see from the tweet from Peter Todd, of Scott Moncrieff , he feels that the vested interests (royal colleges ) are trying to get a second bite of the cherry .

 

 DR BEN MARSH - PAEDIATRICIAN -WRITES LETTER OF CONCERN TO ROYAL COLLEGE OF PAEDIATRICS AND CHILD HEALTH REGARDING THEIR CONCERNING BEHAVIOUR IN RESPONSE TO NEW NICE GUIDELINES DELAY ON ME / CFS

Dr Ben Marsh is one of the good guys, he is a paediatrician who has ME/CFS himself.

Here is a copy of his letter of concern dated 12 October regarding the delay in publishing the new guidelines on ME / CFS .

He raises the alarm and asks the Royal College of Paediatrics why they recently opposed the new safer guidelines on ME/CFS without explanation.

He also asks - Why the lack of transparency ? why the lack of consultation ?

He concludes by asking for them to change their position , instead of opposing the new safer guidelines he requests they support them.

There is a brief introduction to his background , followed by his letter.

meassociation.org.uk/2021/10/dr-ben-marsh-calls-on-the-royal-college-of-paediatrics-to-explain-why-they-caused-a-delay-in-nice-guideline-publication/