I can't believe this! The Long Covid SOS group just tweeted this: The RCGPs helped them produce this leaflet for guidance for GPs for safe guidance for Long Covid patients, and NHS England are helping distribute the leaflet! It's staggering hypocrisy from the RCGP and NHS England to help with safe guidance for Long Covid sufferers while encouraging hostility and belligerence towards ME patients, by denouncing our NICE Guideline for safe practice, continuing to push GET/CBT, NHS England calling ME "tiredness" and currently some hospitals medically abusing severely sick young women with ME. The Long Covid Leaflet recommends Pacing and remaining within their 'energy envelope'. This leaflet is a kick in the teeth for ME patients! The tweet by the Long Covid SOS group: "If you're struggling with your GP's understanding of #LongCovid and are finding it difficult to get help, please download the leaflet we developed with @rcgp and send it to them @NHSEngland ICBs are helping us to get this information out there too https://longcovidsos.org/gp-leaflet /end" https://twitter.com/user/status/1781328787168202780 The leaflet: https://www.longcovidsos.org/gp-leaflet . .
A reminder that THIS is what the Royal College of GPs published in response to the 2021 NICE Guideline for ME. There is no mention of pacing or advice to stay within our energy envelopes, but why would there be for a condition that NHS Englad calls "tiredness". https://www.rcgp.org.uk/representing-you/policy-areas/guidance-on-me-cfs Joint statement in response to NICE guidance on ME/CFS 'Medical leaders have signed a joint statement in response to the National Institute for Health and Care Excellence (NICE) guidance on the treatment and diagnosis of Myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS). We are pleased that NICE have now published their guidance for the management of ME/CFS. Which is a chronic, poorly understood condition and can be highly disabling and distressing. It is important that all patients with this condition are given access to the best possible services and treatments available. The published guideline contains some positive changes. But these do not go as far as we would've liked and understate the importance of activity and exercise in the management of ME/CFS. The connection between people’s mental and physical health. We also do not think the changes represent the positive discussions that have been had with patient groups. As in many chronic conditions, people’s mental and physical health are intrinsically linked. This guidance risks undermining the importance of these links by dismissing the potential of treatments such as Cognitive Behavioural Therapy (CBT) as of less value in alleviating symptoms than pharmacological interventions. There is considerable disquiet in the medical profession and some patient groups about the way the data and evidence have been assessed, but the important thing now is that services are commissioned in a safe and effective way that does not disadvantage any patients being treated now or in the future. When commissioning services we would reiterate that: Graded Exercise Therapy as defined in the guidance is not reflective of the personalised paced exercise programmes that are currently used in the NHS and termed GET. These have provided benefit to many patients and should not be discontinued. However, we recognise that the phrase GET is unhelpful, and this terminology should be dropped to allow clinicians to work with their patients in a more productive way. CBT remains a valuable treatment for alleviating symptoms in ME/CFS and services should ensure patients have access to this and other psychological therapies. Specialist rehabilitation medicine services and exercise medicine services regularly look after patients with ME/CFS (and also provide complex care and long-term support for very severe ME/CFS) but are not specifically recommended in the guidance. There are very few dedicated ME/CFS specialist services either in the community or hospital settings. If commissioners do not use specialist rehabilitation medicine services and exercise medicine services, these patients will lose out. Commissioners must also take action to ensure training and support is available for the full range of specialist ME/CFS roles needed and are accessible for GPs, and other clinicians across the NHS. So that this guidance can be put into practice. Many patients with ME/CFS have other conditions including chronic pain and fibromyalgia which are improved with exercise as recommended in other NICE guidance. It is important that a holistic approach is taken to ensure that other conditions do not deteriorate. Royal College of Physicians Royal College of Physicians of Edinburgh Royal College of General Practitioners Royal College of Psychiatrists Academy of Medical Royal Colleges Faculty of Sport and Exercise Medicine Faculty of Occupational Medicine' .
Might just be different people within the RCGP? It's a pretty big organization, isn't it? The leaflet is a bit of a mixed bag, acknowledgement of PESE(I'd prefer PEM) is good. Admitting that you don't know much yet is good. The part about helping with breathing is unevidenced bollocks as far as I'm aware and there's some other stuff in there too that I'm not quite sure about. What is clean sleep for example? Either way, if LC patients get out something that helps them, good on them. I don't begrudge them that. I hope that one day the people that would deny us the same get kicked out of the RCGP and progress can be made.
I don't begrudge the LC people the leaflet at all. That's not the point I was making. But the RCGPs and NHS England have double standards. If it was the case it was certain people within the RCGP involved with that leaflet, then why couldn't they, or certain other people within the RCGP, help ME sufferers with vital information for safe practice for ME. And why have the top people at the RCGP not denounced this leaflet, as they publicly denounced NICE for ME. Sorry, it just doesn't add up that it's OK for LC patients to have safe guidance but not for ME patients. The very public denouncement of NICE by those Royal Colleges has incited NHS Drs' hostility towards us to greater heights. Edit Add. To see the leaflet, which NHS England is helping to disseminate, advise LC patients to do Pacing and to stay within their 'energy envelope' is too much, when NHS England do not advise that for ME patients. Pacing was invented for ME, developed by ME patients (some pwME worked out pacing even before they'd ever heard of it) ..... and the term 'Energy Envelope' was created by Prof Leonard Jason for ME patients. But we don't get that advice via the RCGP or NHS England. . .
I would say this leaflet represents a step forward for the RCGPs, and suggests the ME deniers are losing their influence over the organisation as a whole. Certainly this leaflet also provides ammunition to use against the College in relation to their position on ME and their previous attempts to undermine the NICE ME/CFS guidelines.
@Peter Trewhitt wrote: "Certainly this leaflet also provides ammunition to use against the College in relation to their position on ME and their previous attempts to undermine the NICE ME/CFS guidelines." Indeed.
This looks to me like the same old amateur mishmash from therapists wanting to sound friendly, except only friendly to Long Covid this time even while borrowing all the stuff about ME/CFS and throwing in garbage about 'PoTS'. This will reassure GPs they are doing exactly the right thing and providing person centred medicine based on lived experience or whatever buzz words they go for. There isn't a single bit of evidence for any of it as far as I can see. How do you know someone does not have crashes until they crash? Ugh.
'Sleep hygiene' I suspect. It's what they taught in Bath back in 2011 and still teach today, including the activity management etc and mindfulness. I'm not a bit surprised that this has been endorsed by the RCGP and being distributed by NHSE. Long Covid patients haven't yet acquired the equivalence of hundreds of years of collective experience in post viral fatigue double speak that patients with ME/CFS have. This represents the service delivered in Bath in 2011 and which later showed null results in the MAGENTA trial for CYP. This is straight out of the playbook of PACE APT + CBT, although of course that combination was never tested in PACE. Take a wild guess at what the ME/CFS Delivery plan is going to look like.
An interesting aspect of this leaflet is that for a GP it tells them absolutely nothing of practical use. Which is not surprising because there are no established facts about Long Covid, except that it covers any feeling ill after Covid. It is the purest of window dressing. It mentions pacing maybe but that can mean anything as we know and in a Long Covid rehab centre is almost certainly 'up'.
There is unfortunately zero chance that it leads to a change in their stance about ME, ME/CFS, CFS, "chronic fatigue", or any variation thereof. Even with the mention of PESE in the document. They clearly understand it very little, still advise CBT and GET, and have no issues sticking to contradictions and hypocrisy. There's also some bit about shortness of breath being dysfunctional breathing. There's a reference to some other booklet on "chronic fatigue" that is a muddle of various things and is clearly inspired, or just coincidentally looks a lot like, the adaptive pacing therapy from PACE, with lots of notebooking, "boom and bust" and "finding a baseline". In a sane world this would be somewhat significant, but it's not and they don't care. We can point to them how they contradict themselves and they don't have to respond. The leaflet still advises GET and CBT so it's not any real change, they're capable of asserting that PESE must go away on its own eventually, then it's all up to the right column, "Fatigue without PESE", which advises exercise and frames it as deconditioning. In medicine, only biological facts matter. The rest is... ah who even knows at this point?
I think that the other thing to remember is that there is often some grace given to some people as long as their illness is short-lived enough and they are seen to be heading in the right direction. And we know that from those who had covid they are almost in research separating off groups by people who had it '4-6weeks' as a starting point for their 'post-covid' and lots of people are therefore bundled under that who recover within a year, but some really quite soon. These sorts of timescales are still 'sort of' accepted within the bounds of 'other illnesses' by enough nice people that it keeps the ones who are pretty horrid in line. It is normally before people can get laid off completely from work. It sort of works with some return to work policies. What would have in previous days of ME/CFS been captured in the 'post-viral syndrome' type category rather than the 'CFS' dump-pot (which was normally retrospective after that ship had sailed) Is this a leaflet that is actually intended for those who are in this situation, or those who have actually long covid that becomes ME/CFS like?
