ME/CFS meeting at the Royal Society of Medicine - March 18th 2015

[MeSci]

Jonathan Edwards said: ↑
The cultural shift will come as proper pharmacology comes in to ME/CFS.

I agree. However the psychogenic claims will continue to be made for other disorders. This is a blight on science, medicine and government, and its important those who support psychogenic claims stop protecting them, or that the silent majority finally do something about it. Sadly I think this is unlikely, but we have to keep trying.

Pharmacological treatments are used for presumed mental illness too, so I am not confident that using pharma to treat ME will make the psychoquacks shut up.

 

[MeSci]

"re-enablement"

What a crock. :thumbdown:

following 'rehabilitation'.

I feel an Amy Winehouse song coming on...No no no

 

[alex3619]

Pharmacological treatments are used for presumed mental illness too, so I am not confident that using pharma to treat ME will make the psychoquacks shut up.

There are no mechanisms or distinct objectively diagnosable psychiatric disorders, with validated biomarkers. It is extremely likely this will not be the case for ME. In addition, they will not shut up. However others will stop listening to them.

 

[MeSci]

I think you are talking sense. I reckon it is crucial to get the clinics far away from mental health. ME/CFS(SEID???) needs to stand alone. There needs to be a team lead who is a doctor but not a psychiatrist. Some kind of general physician (I am making this up as I go along and maybe don't have a clue about what I'm talking about) but someone who only gets the job because they have been interviewed by...let's see...I know: Professor Holgate, Charles Shepherd and Sonya Choudhury and that nice person who is the boss at the 25 per cent charity...oh and we should have the Countess on board too. There are a few other people who could help-maybe Forward ME could sort the interview panel out. So they have to be VERY WELL INFORMED about the whole subject ie ME.

NOT Sonya Chowdhury, if you are looking for someone with medical knowledge. She has shown herself on here not to be well-informed in that respect.

This person needs to thoroughly screen the patients for any other known conditions. (We all know that patients have rarely been screened properly).

Now, if a patient is showing overt signs of psychiatric disease then I think a psychiatrist could be involved if the patient is willing. (But that is the only time they will be allowed to step through the clinic's door at present).

Other staff at the clinic should also be thoroughly educated about the current situation surrounding the diagnosis and the fact that the name of the disease is an umbrella term and no-one really knows what is wrong with the patients other than that which the patients describe.

So I think a dietician should be a member of the team, obviously a few specialist nurses, a physiotherapist and, if a patient would like some counselling, then a psychologist will be required.

If any of the staff utter the word 'somatoform' they should be fired immediately or moved on.

The patients should be asked what they feel would help them.

I'm concerned about dietary advice given by anyone trained in the current 'norms', which are very misguided and being contradicted/contraindicated by more-recent research findings, such as re fats and carbs, and gluten intolerance.

I'm in two minds about psychiatrists and counsellors. On the one hand I worry that the roles could end up being hijacked by quacks. On the other hand, external (general) psychiatrists and counsellors have been found by at least one PR member to give completely unhelpful advice by people who lack understanding of ME/SEID, e.g. suggesting things that are physically impossible for a sufferer, but they may also lack understanding of a person's co-morbidities, e.g. Asperger's syndrome, which again requires some specialist understanding.

I've got it! We need a global network of Phoenix Rising clinics!

Now to see about the funding...

 

[justy]

Not quite on point, and I haven't read all thread as am unable right now, but this ongoing question of whether or not doctors can do anything for PWME drives me mad!!

On a most basic level I have pain of varying types, I have consistent iron deficiency anaemia despite supplementing and I now also have Mast Cell activation.

On the first point - pain - I have never been even offered a painkiller. I have stated I have pain to many doctors and no one has ever asked me if it is controlled or if I need anything. Recently I had a rheumatologic apt that I waited over two years for (and the Gp's kept saying - wait till you see the rheumatologist and see what they say) I told her about the pain and said I have no pain relief and don't know what to take and was ignored, no response at all.

Secondly low ferritin and anaemia - this has been ongoing for 7 years and I keep being given iron tablets that I cant tolerate and make me feel really sick - they have made no difference to my ferritin levels which remain low. Why have I not been offered either injections, infusions or an apt with a haematologist? My GP said - wait till you see the rheumatologist so I told her and she ignored it again.

Mast cell issues - I am currently reacting to everything I try and take, so haven't been able to even take a paracetomol for 6 months - the immunologist who I saw for the mast cell/itching was not interested and wouldn't discuss it. I have not been offered anything more than antihistamines for this problem, when other drugs are available.

I have been discharged by the rheumatologist after 1 visit. No help from anyone for even the simplest of things.

 

[Sidereal]

I'm concerned about dietary advice given by anyone trained in the current 'norms', which are very misguided and being contradicted/contraindicated by more-recent research findings, such as re fats and carbs, and gluten intolerance.

Couldn't agree more. Dietitians have no idea what they're talking about. Regurgitating discredited research about fats and carbs from 1970s. Follow their advice and you are bound to end up obese and depressed. Yet another damaging "service" for patients.

 

[rosamary]

NOT Sonya Chowdhury, if you are looking for someone with medical knowledge. She has shown herself on here not to be well-informed in that respect.


I'm concerned about dietary advice given by anyone trained in the current 'norms', which are very misguided and being contradicted/contraindicated by more-recent research findings, such as re fats and carbs, and gluten intolerance.

I'm in two minds about psychiatrists and counsellors. On the one hand I worry that the roles could end up being hijacked by quacks. On the other hand, external (general) psychiatrists and counsellors have been found by at least one PR member to give completely unhelpful advice by people who lack understanding of ME/SEID, e.g. suggesting things that are physically impossible for a sufferer, but they may also lack understanding of a person's co-morbidities, e.g. Asperger's syndrome, which again requires some specialist understanding.

I've got it! We need a global network of Phoenix Rising clinics!

Now to see about the funding...

I think Sonya should be there on the panel. She can focus on whether the applicant is knowledgable enough of the impact of DWP application form filling on the overall health of patients and could ensure that the applicant knows which other services could be helpful to patients. She could also ensure that the applicant knows a bit about the severely ill patients.

I still think there needs to be a dietician. However, maybe it should be a requirement that he/she receives training in John Chia's work and reads Charles Shepherd's purple book. (In fact, they should all read that prior to any interviews.)

 

[charles shepherd]

I think Sonya should be there on the panel. She can focus on whether the applicant is knowledgable enough of the impact of DWP application form filling on the overall health of patients and could ensure that the applicant knows which other services could be helpful to patients. She could also ensure that the applicant knows a bit about the severely ill patients.

I still think there needs to be a dietician. However, maybe it should be a requirement that he/she receives training in John Chia's work and reads Charles Shepherd's purple book. (In fact, they should all read that prior to any interviews.)

MEA purple booklet:

http://www.meassociation.org.uk/201...e-latest-research-all-wrapped-up-in-52-pages/

Copies of which were in the information packs for everyone at the RSM meeting!

I will shortly be starting work on the 2015 edition - which will include reference to NIH and IoM reports, name change proposals, Hornig/Lipkin cytokine study and Peterson et al CSF cytokine study, Japanese PET scans and neuroinflammation etc. All wrapped up in 56 pages this time….

 

[Ecoclimber]

What is alarming is the naivety of the medical profession concerning the reality on the ground with regards to the politics and the social policy of the their government in bio/psych/social funding especially with medical research in its application to certain unproven diseases and illnesses.

The insurance industry(medical/health/disability) pours in hundreds of millions of dollars into the coffers of polticians, researchers and research projects to promote the psych/social model at the expense of funding medical research investigating certain diseases and illnesses that will cost Parliament and the insurance industry significant outlays of funding. There is a huge push to move bio/medical research into the psych/social model to reduce costs and increase revenues to the those stated interests above and that's the the real reality of medicine.

The crux of the matter is a policy of special interests bent on the promotion of pysch/social model over the bio model. Costly medical/disability benefits by a goverment that wants to keep a tight reign on spending by giving them an excuse through their alliance with the insurance industry. Hugh profits can then be accumulated by denial of claims and benefits to those effected.

An example of just one insurance profits and denial of benefits

Total revenue of Unum Group improved 2.9% year over year to $2.65 billion on strong sales, solid persistency and continued success with the ongoing renewal and re-pricing actions.

Unum U.K.: Premium income increased 8% year over year to $148.9 million. In local currency, income decreased 10.5% year over year to £94 million.

Operating income was $38.2 million, up 6.4% year over year. In local currency, the figure came in at £24.1 million, up 8.6% year over year.

Benefit ratio was 68.9%, down 410 basis points (bps) from 73% in the year-ago quarter. The lower benefit ratio reflects growth in premium income and favorable risk experience in the group long-term disability and group life lines of business.

3000 lawsuits were filed in the previous five years against the Unum Group

In a period of austerity, this model works for Parliament and the Tory government. What this model fails to take into consideration is the cost to GDP of their country in lost wages and productivity.

 

[charles shepherd]

There is a huge push to move bio/medical research into the psych/social model to reduce costs and increase revenues to the those stated interests above and that's the the real reality of medicine.

This is an over simplistic conclusion and I certainly don't agree with you here in relation to ME/CFS

As I've argued many times over the years, sending people off to have courses of CBT and/or GET when they either don't benefit, or it makes them feel worse, is not cost effective. In addition, these type of behavioural treatments are actually very labour intensive and so costly to carry out.

I don't have the figures to hand but I think we are looking at around £1500 for a full course of CBT or GET in a specialist referral centre

Here in the UK the DoH, DWP and government ministers are painfully aware of the huge cost to the economy of ME/CFS in terms of DWP benefits, lost taxes, medical costs etc.

So I don't think there would be any reluctance on the part of government (or the insurance industry) to start using a non psychiatric drug treatment - if this was shown to be safe and effective (and so taking people off benefits and getting them back into work) and was not massively expensive.

 

[Debbie23]

MEA purple booklet:

http://www.meassociation.org.uk/201...e-latest-research-all-wrapped-up-in-52-pages/

Copies of which were in the information packs for everyone at the RSM meeting!

I will shortly be starting work on the 2015 edition - which will include reference to NIH and IoM reports, name change proposals, Hornig/Lipkin cytokine study and Peterson et al CSF cytokine study, Japanese PET scans and neuroinflammation etc. All wrapped up in 56 pages this time….

Both my GP and OT requested and received a copy of your purple book. I don't know for sure but I get the impression my very lovely GP has been reading it. We have to move at the end of the summer I will definitely be purchasing a copy of the 2015 one to pass on to my new GP. I'm very, very nervous about meeting a new GP anyway, especially as my current GP is so lovely and it's already going to be hard to loose her as I have so much trust in her, but I feel that may give me some confidence in going. So I'd just like to take the opportunity to thank you and Dr Chaudhuri for your work on writing These books!

And for all you do, along with Jonathan Edwards and the Countess of Mar, it means such a lot.

 

[Aurator]

and was not massively expensive.

Ay, there's the rub. If every financial encouragement were suddenly to be given to biomedical research, the government might shortly find themselves with little alternative but to fork out colossal sums for drug therapy for PWME, and it might be a drug therapy that still allowed only a proportion of the sick to return to work and start paying tax again. They would then be in a worse position financially in respect of PWME than they are at present.

It's hard to avoid the conclusion that the current thinking is that in spite of the inevitable cost to the economy of the present situation, it's a case of better the devil you know.

 

[Ecoclimber]

There is a huge push to move bio/medical research into the psych/social model to reduce costs and increase revenues to the those stated interests above and that's the the real reality of medicine.

This is an over simplistic conclusion and I certainly don't agree with you here in relation to ME/CFS

As I've argued many times over the years, sending people off to have courses of CBT and/or GET when they either don't benefit, or it makes them feel worse, is not cost effective. In addition, these type of behavioural treatments are actually very labour intensive and so costly to carry out.

I don't have the figures to hand but I think we are looking at around £1500 for a full course of CBT or GET in a specialist referral centre

Here in the UK the DoH, DWP and government ministers are painfully aware of the huge cost to the economy of ME/CFS in terms of DWP benefits, lost taxes, medical costs etc.

So I don't think there would be any reluctance on the part of government (or the insurance industry) to start using a non psychiatric drug treatment - if this was shown to be safe and effective (and so taking people off benefits and getting them back into work) and was not massively expensive.

My understanding from UK members, that ME/CFS is categorized as a pscyho-somatic disorder and therefore are denied medical treatments (medical labs, MRI and medicine to treat their biological symptoms) and disability benefits unless proven there is a biological eitology to their illness. Children are taken away from their families for enhancing false illness beliefs, and many patients are locked away in psych wards for refusing CBT/GET believing there is a medical cause for their illness. I have hundreds of cases to prove my point. Is this not so?

In the United States, this is the situation. ME/CFS is diagnosed as psycho-somatic disorders with the CDC treatment options for physicians as CBT/GET and psychotropic medicine. LTD is routinely denied. So, I find your statement very puzzling and disconcerting by the fact that it denies the reality on the ground within the U.S and UK. What was Lady Mar' speech about then if it wasn't the fact that the medical profession in the UK has failed to recognize ME as a medical disease but a psycho-somatic disorder - 'false illness belief or a variant of sickness behavior - as Wessely and White so states? Why are we here then protesting?

There are effective medication to treat the symptoms of ME used in the U.S so we are not as draconian as the UK (Neurotin, Bacflofen, Valtrex, Tizanidine, Oxycodone, Immunovir, LDN, Famvir, Methocarbamol, Alprazolam, Acyclovir, Adderall, Ambiem) just to name a few. Do patients have access to these forms of medication for treatment for ME in the UK?

How much medical research is funded by the Welcome Trust into the biological causes for ME/CFS as to the funding for the psych/social model in the UK?

 

[CBS]

I realise there is a fashion for CBT currently but I keep seeing various meta-analyses being referred to and not showing great results. I've not done a complete survey though. I suspect within CBT people learn a few thought tricks that help but what surprises me is that their is no underlying cognitive model behind how it would work. Or as far as I can tell any attempt at applying such. To me if falls in a camp along with NLP of pseudo science. It might be an incantation that helps but science should try to explain. In non-blinded trials I think it becomes hard to really test.

I don't want to take this thread off topic but but I think you'll have more success in refuting its use in ME/CFS if you understand and accurately portray it. You're also likely to get physicians who have seen CBT work in cardiac patients to realize why it is inappropriate in ME/CFS. If you rant against it claiming "it's all nuts" they'll dismiss you as uninformed because they've seen it work but they don't understand the important differences between patient groups. The meta analyses have nothing to do with the underlying theory and the underlying theory is quite simple and can be effective for the right population.

The cognitive bit is the "irrational fear." In heart patients there is a widely recognized and quite understandable anxiety about palpitations, etc. following a coronary event/surgery. Few healthy people spend much time thinking about their hearts. It's just always there and until recently, it has been reliable for them. They have a month or so of symptoms they minimize and then they have a blockage, tissue damage etc. (heart attack) and they realize those symptoms were a clear warning. BUT, everyone has a skipped beat or a racing pulse every so often and following surgery nothing really feels right. But cardiac patients don't have the same kind of confidence the rest of us do (there are some notable and reasonable exceptions amongst ME/CFS patients but that's beside my present point) with regards to our hearts and so following their coronary events, the patients interpretation of what those sensations now suggest is paralyzing and can lead to behavior that worsens their condition. So the counselor talks about the cognitive issues but that's usually not enough.

The Behavioral bit means that under medical supervision, heart patients have to start doing some of those things that cause the anxiety and/or induces those sensations. With enough practice (behaving) that causes the coronary sensations ("symptoms"), the coronary patient learns to pay less attention to the symptoms, starts to increase activity as the sensation are less of a concern, etc. In a successful case, the patient gets into a positive upward cognitive/behavioral spiral.

CBT was a product of the 50's. Albert Ellis and Araon Beck (Beck depression scale) did a lot with it in the late 50's/early 60's. It does work in the right group of patients but as I stated above, applying it to ME/CFS patients requires a huge set of assumptions and the spectacular failure of the PACE trial should have led Peter White and co. to the only intellectually honest conclusion, that CBT was not effective/appropriate for ME/CFS ("hmmm, maybe this really isn't an an anxiety disorder") or that the were the worst practitioners of CBT in the history of behavioral medicine ("and that accordingly, they had no business being in the CBT business"). Instead, they compounded their mistake by claiming that for some magical reason, ME/CFS patients were immune to a treatment known to be effective for the types of problems these "investigators" were presuming were in play (that magical reason is the ever so useful "secondary gain" - because losing your career, family, social life, etc. and being bedbound for years is just too much fun to pass up the opportunity).

If White were intellectually honest, his conclusion would have to be that PACE was based upon a false premise and that it is long past time to go back to the 1991 papers by Strauss, et al and to investigate the alternative hypotheses, mechanisms for organic illness that would explain the identified HPA and immunological anomalies in ME/CFS patients.

 

[ukxmrv]

There are effective medication to treat the symptoms of ME used in the U.S. (Neurotin, Bacflofen, Valtrex, Tizanidine, Oxycodone, LDN, Famvir, Methocarbamol, Alprazolam, Adderal, Ambiem) just to name a few. Do patients have access to these forms of medication for treatment for ME in the UK?

In a nutshell the answer is no, unless there is a secondary reason for the drug OR if by coincidence it is a well known and cheap treatment for a common symptom in other diseases.

Then add to that, uncertainty from individual beliefs of specific doctors or consultants. This means that that patients may see a (as an example) Immunologist or Rheumatologist and be offered drugs that the same doctor in the next hospital won't prescribe.

As an example I was offered Baclofen because I developed symptoms of my limbs jerking after a road traffic accident. Lyrica was suggested by a Rheumatologist who told me he could not prescribe it but my GP refused to write a prescription, back to aniother Rheumatologist who did. This takes years as the waiting lists to see a NHS consultant are long in my experience.

The UK NHS doesn't recognise that anti-viral drugs have a place in ME treatment because they don't believe that ME patients have persistent infections. No amount of providing them with USA tests used by reputable doctors there makes a difference. So no Valtrex, Famvir etc. That is unless one has genital herpes and then an occasional Valtrex prescription can be gained.

The NHS should work by treating the symptom but in reality it doesn't. If one presents with a ME symptom then drugs are denied because there is no recommendation to use them in the disease. If the drug isn't used in other diseases for common symptoms then the GP is doubly unlikely to prescribe it.

Example 1 - Valtrex lessens my sore throats and glands yet no GP will write me a prescription for this. Valtrex is not a treatment for recurrent sore throats and glands.
Example 2 - Immunovir lessens my viral attacks - same problem

 

[Jenny]

There are effective medication to treat the symptoms of ME used in the U.S so we are not as draconian as the UK (Neurotin, Bacflofen, Valtrex, Tizanidine, Oxycodone, LDN, Famvir, Methocarbamol, Alprazolam, Acyclovir, Adderal, Ambiem) just to name a few. Do patients have access to these forms of medication for treatment for ME in the UK?
How much medical research is funded by the Welcome Trust into the biological causes for ME/CFS as to the funding for the psych/social model in the UK?

I'm in the UK and of the medications you mention I have been given Valtrex, Oxycodone, and the equivalent of Ambien by my GP on the advice of an immunologist. I took Valtrex for 2 years and it didn't help at all. Ambien though has been very effective for sleep. I was also prescribed LDN by a private doctor, but this made my pain worse.

The situation in the UK is extremely variable. Over my 33 years of seeing scores of doctors only one has ever suggested a psychological reason for my ME, and after I showed her the evidence for an immune system dysfunction she agreed that she was wrong. I have also successfully requested numerous other pain, anxiety, gastric, antibiotic, anti-viral and other miscellaneous medications and supplements from 5 or 6 NHS GPs in Reading and London over the course of my illness.

 

[Ecoclimber]

I'm in the UK and of the medications you mention I have been given Valtrex, Oxycodone, and the equivalent of Ambien by my GP on the advice of an immunologist. I took Valtrex for 2 years and it didn't help at all. Ambien though has been very effective for sleep. I was also prescribed LDN by a private doctor, but this made my pain worse.

The situation in the UK is extremely variable. Over my 33 years of seeing scores of doctors only one has ever suggested a psychological reason for my ME, and after I showed her the evidence for an immune system dysfunction she agreed that she was wrong. I have also successfully requested numerous other pain, anxiety, gastric, antibiotic, anti-viral and other miscellaneous medications and supplements from 5 or 6 NHS GPs in Reading and London over the course of my illness.

Perhaps you should inform Countess Mar as her statement before the Royal Society of Medicine and the numerous testimonies of UK patients on PR counteracts against your statement above.

 

[charles shepherd]

My understanding from UK members, that ME/CFS is categorized as a pscyho-somatic disorder and therefore are denied medical treatments (medical labs, MRI and medicine to treat their biological symptoms) and disability benefits unless proven there is a biological eitology to their illness. Children are taken away from their families for enhancing false illness beliefs, and many patients are locked away in psych wards for refusing CBT/GET believing there is a medical cause for their illness. I have hundreds of cases to prove my point. Is this not so?

In the United States, this is the situation. ME/CFS is diagnosed as psycho-somatic disorders with the CDC treatment options for physicians as CBT/GET and psychotropic medicine. LTD is routinely denied. So, I find your statement very puzzling and disconcerting by the fact that it denies the reality on the ground within the U.S and UK. What was Lady Mar' speech about then if it wasn't the fact that the medical profession in the UK has failed to recognize ME as a medical disease but a psycho-somatic disorder - 'false illness belief or a variant of sickness behavior - as Wessely and White so states? Why are we here then protesting?

There are effective medication to treat the symptoms of ME used in the U.S so we are not as draconian as the UK (Neurotin, Bacflofen, Valtrex, Tizanidine, Oxycodone, Immunovir, LDN, Famvir, Methocarbamol, Alprazolam, Acyclovir, Adderall, Ambiem) just to name a few. Do patients have access to these forms of medication for treatment for ME in the UK?

How much medical research is funded by the Welcome Trust into the biological causes for ME/CFS as to the funding for the psych/social model in the UK?

Reply

As a physician who has been involved with this condition for over 30 years, and as medical adviser to a national charity, I don't believe that this is an accurate reflection of the situation here in the UK.

Don't get me wrong. There are plenty of things amiss with the way ME/CFS is assessed, diagnosed, managed, and researched here in the UK.

As has already been pointed out, and was also discussed at the RSM, there is a wide spectrum of medical opinion about both cause and management of ME/CFS - as occurs in most other parts of the world where this illness is recognised.

So there are doctors like myself who assess, diagnose and treat according to the medical model and others who do so on the basis of a psychosocial model. The majority probably sit somewhere in the middle.

Most patients are properly investigated in primary or secondary care when it comes to the list of investigations that are recommended as routine by the MEA, CMO Report, NICE etc. But there is a variation when it comes to the sort of investigations that are appropriate in certain circumstances. And in some cases patients who ought to be further investigated are not receiving the depth of assessment they should. They are consequently being misdiagnosed as having ME/CFS

You list a number of drugs aimed at both symptomatic relief and the underlying disease process. There is no restriction on prescribing drugs that can effectively help with pain, sleep disturbance etc - including options such as gabapentin. And if doctors are aware of the drugs which can help with symptomatic relief (one of my slides at the RSM) they are often wiling to help. The problem here is lack of medical education.

But you won't find UK doctors - private or NHS - prescribing speculative or unproven forms of treatment aimed at the underlying disease process, especially where they are 'not recommended' by NICE. As you may be aware ,The MEA has strongly opposed the decision to place the NICE 'one size fits all' guideline on a static list and we are campaigning for a revision of this guideline.

I spend a huge amount of time dealing with DWP benefits and it is not true to say that people with ME/CFS are being denied DWP benefits unless they can prove they have a biological illness. People with mental health conditions are fully entitled to claim DWP benefits and if you look at the DWP quarterly stats there has been a steady and significant rise in the numbers going into the ESA support group - partly as a result of the work we have been doing with the DWP. The situation re benefits remains unsatisfactory for ALL people with fluctuating medical conditions but it is not as bleak as you paint it.

Yes - there are cases of child care proceedings being taken where this is not justified. This is something that the Forward ME Group and our paediatric medical adviser (Dr Nigel Speight) are actively involved with - including meeting Mrs Isabelle Trowler, the Chief Social Worker for Children and Adolescents and the Minister responsible for children, Edward Timpson MP. It is on the radar and not being ignored.

Regarding detention of adults under the Mental Health Act: Apart from a very small number of isolated cases it is not true to say that there are 'many' adults being locked away in psychiatric wards for refusing CBT and GET. The situation here in the UK is that there is a desperate shortage of NHS psychiatric beds for people with severe or acute mental illness. You cannot find a psychiatric bed when you need one - as I know from recent experience of trying to do so - not for someone with ME/CFS I should add.

The Welcome Trust funded our meeting at the RSM, and have occasionally funded ME/CFS research (e.g. one of the XMRV replication studies) but I'm not aware of any ME/CFS research being funded by WT at the moment.

People with ME/CFS in the UK do still have really bad experiences with GPs, consultants, DWP assessments to report, which is unacceptable. And the situation for people with severe ME/CFS is scandalous in relation to lack of in-patient facilities for assessment and domiciliary services (as I said at the RSM meeting).

So yes, there are plenty of problems and bad practice and lots of work to be done.

But there are also quite a lot of doctors and health professionals who really want to help their patients with ME/CFS.

 

[Alison2]

I think Sonya should be there on the panel. She can focus on whether the applicant is knowledgable enough of the impact of DWP application form filling on the overall health of patients and could ensure that the applicant knows which other services could be helpful to patients. She could also ensure that the applicant knows a bit about the severely ill patients.

I still think there needs to be a dietician. However, maybe it should be a requirement that he/she receives training in John Chia's work and reads Charles Shepherd's purple book. (In fact, they should all read that prior to any interviews.)

Sonya C. Hosted a symposium on the severely affected a while ago.it was pretty awful.I wouldnot want her to speak for me.,

 

[MeSci]

I don't have the figures to hand but I think we are looking at around £1500 for a full course of CBT or GET in a specialist referral centre.

Can someone tell us how that compares to effective treatments, e.g. Rituximab or LDN? It doesn't sound a lot to me. £1500 is about 2243.8 US dollars according to one on-line converter.

EDIT:

Edit - when I say 'effective treatments' I mean treatments that have shown promise in clinical trials or treatments that self-selected groups, such as people here, have found to be effective and improve function, ability to work, etc.

As the 'evidence' which NICE and others claim indicates efficacy and safety for CBT and GET is, when scrutinised, really no better than patient self-report here, I see no excuse for them to stick to the position that CBT/GET should be recommended and the patients' preferred treatments should not, especially as patients also report in their droves that CBT/GET has seriously harmed them.