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

monklady123

I set up the thread to help people , my family has ME which has very similar symptoms to LONG COVID being a post viral illness and is thought have overlaps by researchers and physicians.

It has evolved to include information to help people from having bad medical advice which could worsen their illness .

it also gives a heads up on problems people with LONG COVID may likely encounter .

It is very very long but it is a complicated subject and not straightforward , so if someone is having problems getting care , or support ,or health insurance ,or benefits there are posts that contain information to help with that.

I completely understand that the length is off putting.

There is a list of contents on page 1, which details the subjects that have been posted and their page number ( currently up to 6 ) as the thread has evolved to become very long. Understandably there is a lot to scroll through. It has sort of become mainly a repository for information but it can be for conversation too.

See screenshoots below

There are healthcare guides highlighted in bold near the start for LONG COVID and ME . These are shown in post 1 on page 1,
So people can find help straightaway , rather than scroll through a lot of posts.

The connections between ME and Long Covid interweaved throughout the thread,

Some items are just about either LONG COVID or ME / CFS alone but mostly they are about the overlap that is medically recognised between the two as being very similar . Posts include medical research articles, health insurance , clinical care , healthcare guides, government programs.

It has taken many weeks of work to put together and been an enormous amount of work but it will be worth the effort if helps protect people from getting a more severe illness and undergoing years of extreme disability as we have ourselves.

Below are screenshots of the contents listed on page 1. There are some purely about LONG COVID .

 

 LONG COVID PHYSIO - OPEN LETTER TO NICE ABOUT GUIDELINES FOR ME/CFS

A letter from LONG COVID organisations around the world urging NICE not to delay publishing the new guidelines on ME/CFS myalgic encephalomyelitis / chronic fatigue syndrome which has overlapping symptoms with LONG COVID.
Dated 16 October

longcovid.physio/open-letter-to-nice

 





they add that the delay is harming both LONG COVID and ME / CFS patients.

wellway

thank you so much, it is nice to know x

monklady123

Glad you like them, I have now altered the beginning of the thread as well to hopefully make things a bit clearer .

wishing your friend all the best , 

 I have decided to take a break away from this subject for now , I could do with a rest.

For the time being and foreseeable future I will not be adding any further articles to the repository .

I feel I have exhausted the subject matter and there is not much more I can add from our experience and family perspective.

Thank you for letting me have the opportunity to have my voice, feelings and thoughts out loud.

Hi wellway,

thanks for letting me know I hadn’t realised the BBC has covered it, I really appreciate it.

I am just in the process of ploughing through the new guidelines all 280 + pages of them !

It is good to hear there has been BBC coverage , the more people that know the better .

 PART 1 - HEALTHCARE PATHWAY FOR ME / CFS NOW AVAILABLE.
WHICH IS VERY USEFUL FOR PATIENTS TO BE INFORMED ABOUT PROCEDURE DURING DOCTORS APPOINTMENTS

PART 2 - DOCTORS ORGANISATIONS ISSUE JOINT STATEMENT DATED 29 OCTOBER DISAGREEING WITH NEW GUIDELINES, (INCLUDES STAKEHOLDER COMMENTS FOR EXTRA CONTEXT)
( LONG COVID NEWS HERE AS WELL )
WARNINGS FOR CONTINUED PATIENT HARM FROM DR SPEIGHT - GOOD GUY

PART 3 - POTENTIAL FOR PUBLIC INQUIRY / GOVERNMENT INVESTIGATION

This is a long post but I have written it because of ongoing developments occurring over the past 48 hours which are cause for concern. I hope that this post will provide people with sufficient information to be aware of potential future difficulties covering pitfalls, loopholes, dangers, rights, and entitlements. Being well informed can make all the difference between receiving right and wrong care which could in turn affect disease severity and duration.

Part 1

pathways.nice.org.uk/pathways/me-chronic-fatigue-syndrome

This new healthcare pathway is what doctors will now be expected to use in the UK to provide medical and social care to ME / CFS patients. They should be able to access this on their computer screens during appointments. Link above.

It is an easy to follow format of the new nice guidelines from the 29th of October 2021. It is designed specifically to use during consultations.

The format is in the form of a flowchart - each box when selected will lead to further information.

I would strongly advise any UK ME / CFS patients or their families to go through this flowchart. Knowing what is expected of doctors will be very helpful in obtaining best possible care.

It covers post exertional malaise as one of four defining symptoms in order to make a diagnosis. It covers energy conservation, hospital care, aids and adaptions,
Social care, support for benefits, adaptations for work or school.
Dietary and medicinal advice. Flare ups and relapses. Safeguarding to protect against forced child removal or adult sectioning. Consideration of sensitivities regarding light, sound and touch. How to make appointments easier for patients to avoid post exertional malaise. It also gives prescription guidance on drug intolerances and special care unique to people with ME as it is so different from other illness.

 





Part 2


Sadly the Royal College of GPs alongside other Royal colleges issued a statement a few hours after the publication of the new guidelines expressing their discontent. The authors of this joint statement were some of the attendees at the roundtable meeting organised by NICE on 18 October . They agreed on that day 18 Oct to accept the new guidelines but have since gone back on their word in some respects. It is important that people know just how untrustworthy they are and their mock concern for patients is camouflaging their own vested interests and disregard for scientific evidence .

www.rcplondon.ac.uk/news/medical-leaders-sign-joint-statement-response-nice-guidance-mecfs

ME/CFS Patients will need to be vigilant.

Although the guidelines are not mandatory doctors are expected to follow evidence contained within them, unless they have good reason not to.

There was a court case ( not ME related ) where the Judge ruled that NICE guidelines are something that should be followed .
This sets a new precedent.

www.nice.org.uk/News/Article/court-warns-ccg-over-disagreeing-with-nice-guidance

 


Some Doctors will be pleased to follow the new guidelines but as shown above by the joint statement there will be some that won’t.
It is unclear with the members of those associations were actually balloted or took a vote.

Onto the good guys - I have come across Twitter posts from several doctors who have spoken out against this joint statement and they are some of the genuinely decent doctors who care about people with ME / CFS. It is clear that the joint statement does not represent all doctors views.

( Asad Kahn recently appeared on the BBC as he is receiving a treatment called H.E.L.P apheresis for his own LONG COVID , it is being done through a clinic in Germany via a special blood filtering machine to remove micro clots . I gather there may be a clinical trial or medical paper in the works. So this is good news. His twitter account talks about it in more detail )

 










 I forgot to add this earlier . These are warnings given a day or so ago by Dr Nigel Speight , who was part of the NICE guideline committee. He was also was present at the roundtable meeting on 18 October arranged by NICE.

He is a Paediatrician and is one of the good guys who has looked after patients with ME / CFS for years.

Here Dr Speight talks via facebook to Tom Kindlon , a great person who runs an ME charity , he has also had medical papers published about patient harms. He knows the subject well as he has ME himself.

Dr Speight gives the following warnings to ME patients so that they can remain unharmed until the effects of the new guidelines slowly change. He gave these warnings within the past 48 hours.

 









Be aware of additional or alternative diagnoses that would make things more difficult, and provide Doctors with opportunities to disregard the new guidelines.
FND - functional neurological disorder
FII - fabricated or induced illnesses
MUS - medically unexplained symptoms
PRS - pervasive refusal syndrome
PPUS - persistent physically unexplained symptoms
BDS - bodily distress syndrome

Please also see my previous post above dated 29 October regarding danger of uninformed consent and omission of extent of harms with regard to ME / CFS treatment including concerns raised in the House of Lords by Baroness Finlay regarding the implementation of the new guidelines and ME / CFS services , she expresses concerns and was deputy chair of the ME / CFS guideline committee. Her concerns show that she feels that the new guidelines may be not followed and old harmful ways hard to change.

Finally, the stakeholder comments involved in the new guideline can be found below.

Stakeholders are people or organisations who registered an interest in the process of the new nice guidelines of ME / CFS.
They were a mixture of medical organisations and patient charities.
They had access to the draft version and were allowed give their opinions about things they agreed and disagreed with as feedback.
These comments were then read by the chair and deputy chair and another member of staff on the MECFS guideline development committee.
Each point was responded to in detail and in writing.

There was an overwhelming amount of comments and some of them make for distressing reading and show a lack of understanding by many medical professionals about ME as a disease and about the research misconduct that has occurred.

The comments are contained within 2 pdf documents below.
There is a large number of pages , over a thousand in each file.
The comments from each organisation are listed in alphabetical order however each file begins with ‘A’ rather than a follow-on continuation through the two documents.

www.nice.org.uk/guidance/ng206/documents/consultation-comments-and-responses-4

www.nice.org.uk/guidance/ng206/documents/consultation-comments-and-responses-5

Part 3

In related news , UK barrister Valerie Eliot Smith has written that she feels it is now time to consider a Public Inquiry into the mistreatment of patients with ME/CFS .This would involve a major government investigation as a matter of public concern.

valerieeliotsmith.com/2021/10/29/nice-publishes-updated-guideline-for-me-cfs/


 

 BULLYING OF NICE GUIDELINE COMMITTEE MEMBERS FOR ME/CFS - CONCERN THAT PATIENTS HEALTHCARE PATHWAYS MAY NOT BE FOLLOWED ALLOWING HARM.

This is a series of tweets from a patient representative who was a member of the NICE guideline committee for ME / CFS.
All members had to sign a confidentiality agreement for the duration of the process. The process took 3 years and now that the new guidelines for ME / CFS have been published a couple of days ago ,the confidentiality agreement is no longer in force.

The patient representative is Adam Lowe and these are his tweets about the bullying that took place. The tweets are a couple of days old.

The tweet to begin with is from a medical professional who feels that this bullying should be known about and stopped. I see from her tweets that she works in clinical commissioning. It will be clinical commissioning groups that implement the new health services for people with ME / CFS.

I have previously talked of bullying and intimidation that medical professionals have experienced when they tried to expose poor research practice and patient harms of ME / CFS ( see page 3 ,Post dated 23 August 2021 Titled - SILENCING CRITICISM , PRESSURE APPLIED TO THESE DOCTORS , RESEARCHERS, AND A POLITICIAN TO SILENCE THEM ABOUT CRITICISM OF CBT AND GET )

The bullying is continuing to be a present day problem by the sounds of it. This could in turn lead to patient harm if the new 2021 health guidelines are not followed correctly and the bullies have influence on the commissioning of ME / CFS clinics with a view to continuing their old harmful practices.


 









The subject covered in a previous post has direct relevance to this , more details and warning are included.
Please see above post on page 6 called -

 PART 1 - HEALTHCARE PATHWAY FOR ME / CFS NOW AVAILABLE.
WHICH IS VERY USEFUL FOR PATIENTS TO BE INFORMED ABOUT PROCEDURE DURING DOCTORS APPOINTMENTS
PART 2 - DOCTORS ORGANISATIONS ISSUE JOINT STATEMENT DATED 29 OCTOBER DISAGREEING WITH NEW GUIDELINES, (INCLUDES STAKEHOLDER COMMENTS FOR EXTRA CONTEXT)
( LONG COVID NEWS HERE ASWELL )
WARNINGS FOR CONTINUED PATIENT HARM BY DR SPEIGHT - GOOD GUY.
PART 3 - POTENTIAL FOR PUBLIC INQUIRY / GOVERNMENT INVESTIGATION

 VERY SAD NEWS -


This is so sad and came as a shock to read it.

Upon reading this tweet I discovered that Sean O’Neill’s daughter had ME and very sadly died recently.

Sean O’Neill is the senior writer at the Times and I followed his articles about ME and shared them here on this thread.

This news regarding his daughter’s recent death is so sad ,so very very sad.

I would like to extend my condolences to him and his family and say how sorry I am to hear this heart breaking news.

Here are his words about his daughter Maeve .

Wishing her peace.