Search results

This was Karen Hargraves quote on radio 4 WATO on the Delivery Plan: ‘I honestly just did not realise that it was possible, in the UK in 2025, to be as sick as my husband is & for there to be basically no specialist NHS services to provide any kind of support’ Another interview with Karen...

Agree except the part of ‘there for me’ what have they rubber stamped? They specifically campaigned for better care provisions, I thought?

Agree, political, media and healthcare landscape are all working against us. Most charities are in the boat with governments. There needs to be a big change, even starting with small steps. Because even if more biomedical proof was found, in this current landscape, they would find a way to...

Does Su’joy’ mean no primary care, no care at all? Or skip primary care and on to specialist care?

Agree. I saw some old articles from when disability fell under the WAO (the previous disability law, now we have the WIA). The tweede kamer (the House of Commons) decided that you did not need an objectifiable test. But still here we are. In the end they just try to deny benefits.

To add why this legal ruling is positive; UWV claimed that ME was ‘niet objectiveerbaar’ translation not objectifiable. They meant that there was no objective proof. However they never tried to make it objectifiable by offering to test patients AND they mostly rejected the testing that...

The UWV uses the FML (Functionele Mogelijkheden Lijst) Functional abilities list. However this list does not include how long you can do something, so a huge disadvantage for ME patients. The Steungroep also has written a report and it showed a lot of Me patients get assessed well enough to...

The official ruling of the Council of Appeal (Raad van Beroep) can be found in this thread. Post in thread 'NL: UWV Dutch Employee Insurance Agency ao disability' https://www.s4me.info/threads/nl-uwv-dutch-employee-insurance-agency-ao-disability.44401/post-624790

I feel so saddened by the fact instead of helping a desperately ill patient, healthcare is making her situation more difficult.

The Central Appeal Tribunal (this is a google translation I prefer the Central council of Appeal) has issued three interim rulings. Dutch version https://www.rechtspraak.nl/Organisatie-en-contact/Organisatie/Centrale-Raad-van-beroep/Nieuws/Paginas/uitspraak-chronische-vermoeidheidsziekte.aspx...

Thinking of everyone affected by these changes.

I tried a noise canceling one many years ago, and the noise canceling was unpleasant. Maybe it was not a very good one. Not sure if it was vertigo. From then on I have used a builders headphone, the 3m one. I really would like one with blue tooth or a jack so I can block out outside noise, but...

What alternatives whould that be (last sentence of the quote)?

Thank you @dave30th for shining the light on this. Quite extraordinary for the NOS. Very thankful for Sander Zurhake.

Another question asked by Theresa Munt MP. This question was aimed at the delivery plan for ME. However the answer was confusing. It alluded to the NHS 10 year plan, but did not say anything about the ME delivery plan.

Aren’t some of these pretty standard lab tests?

Here is a link to the open letter that 100 healthcare workers signed and sent to the NVK (Dutch association of pediatrics) and the VGCt (Association for Behavioral and Cognitive therapy) where they call for change to the current MEcfs treatment guidelines for children and adolescents. In Dutch...

The dutch public broadcaster NOS, runs another article on MEcfs. The item details an open letter that was signed by 100 healthcare workers and sent to the NVK (Dutch association of pediatrics) and the VGCt (Association for Behavioral and Cognitive therapy) where they call for change to the...

Petition for Long covid, MEcfs, Lyme, Pots and Fibromyalgia patients in Belgium (Saw the petition started in April 2024, but did not see it shared in this thread.) https://www.openpetition.eu/be/petition/online/long-covid-me-cvs-lyme-pots-en-fibromyalgie-patienten-vragen-jullie-hulp#petition-main

Apologies if this has been addressed before. Has anyone had success with a cool mattress or mattress topper? Does it help to not overheat? Is the material breathable? Are there any other options to keep your bed cool, that are not noisey?